Gluten!!!!!!!

I just can't justify spending the time and money on something that I don't believe in. I have other things to try first that make more sense to me.

Its not that expensive to try. I've spent much more on the diet and supplements, or on Reiki sessions than homeopathy. And never mind the cost of these gluten free products I have bought and consumed in the last 2.5 years. But all of this pales in comparison to the cost of the heavy drugs many rely on with ITP. I could have returned to hospital and opted for an ivig several times, which costs several thousand a pop to administer. What does rituxan cost these days? $40k a treatment?

I admit that I don't understand the science of homeopathy, and that is odd because I am an engineer and the science is always a big thing with me. But I've learned that sometimes there are things that work and we simply don't understand why. They just work.

A year ago I was pretty much at the end of my rope with ITP and about to finally consider some heavy drug alternatives beyond prednisone. If homeopathy had not helped me out of my last platelet crash, it would have likely been time to move on to rituxan. I dodged the bullet and better yet, I feel as good as ever.

Anyway, I hope we have this discussion sometime down the road and you have actually given homeopathy a try. I never thought I would try it either and yet that has been such a big part of a great 2013. GL.

cheers,

john

John, believe me, the cost of my meds, not only financially but side effects too, is ridiculous. I have not had a decent QOL for years and life as I knew it is over. So in that case, you'd think I'd do ANYTHING to improve things. What I do is read. The day that I go to Lupus Message Boards and start reading that people are improving through homeopathy, I'll think about trying it. I haven't seen it once. When I start to read things other than the homeopathy sites that convince me, I'll think about trying it. If I read articles that actually make sense scientifically, I'll think about it.

I don't have money to waste. Gluten is expensive, yes, but in my mind, was worth trying. I started again today, so hopefully I can keep it up. Right now, will power is my problem because when I got off of it, I realized again how much I like food.

John - I'm curious as to what you use homeopathy for. I use it to keep away colds/flu but so far that is all. Maybe I missed you saying what you use it for - if so, sorry.
Thanks!

Melinda,

Last year I was at the same point I was in 2011. Platelet crashes first due to colonoscopy procedure (I think I reacted severely to the anesthetic) and then a second crash in January last year due to influenza or a really bad virus. Platelets were down <5k on both occasions and I did not go to the hospital to get an ivig. After about 2 weeks of being in the hole (very low platelets), I started homeopathic treatment with April who posts on this board. I have have not looked back. My platelets rose from there back to normal levels and I was able to get off prednisone once again. I have a set of remedies that I used and now whenever I am feeling down, I use my constitutional remedy to get back to normal. I've only had to do this once and that was with the second colonoscopy in Sept.

So to answer your question I use homeopathy to help treat ITP!

cheers,

john

Similar pattern for me but different explanation/treatment. I'm in remission from Rituxan but I've had a few crashes - not quite as low as John but my normal counts are above 200 and I've crashed to below 40. Once was when I had pneumonia/took antibiotics and another few times was when I had fructose heavy food I shouldn't have eaten and had a severe gut reaction (I have fructose malabsorption.) In both cases I did not treat and my counts went back up.

I offer that to suggest that John, possibly you had reactions to the prep for the colonoscopy (some are high in fructose) and also the flu, and that your counts would have returned to normal in a few weeks on their own.
Erica

Hi Erica,

In the end I'm not sure what caused the first crash after my colonscopy. But it was certainly something related to it because my counts were down from +200k to less than 5k inside 24 hours. I had a polyp removed as well and this may have been a factor. Who knows. The second crash, caused by influenza, was much more severe. I was down in my counts for well over a week at less than 5k despite 50-70 mg prednisone a day. Never mind petechia, I had blood blisters the size of silver dollars in my mouth and my tongue bled for days. As I have done in the last 2.5 years, I've treated with prednisone and that is what I did then.

It took me 9 months to get off prednisone in 2011 after about 5 tapering attempts and subsequent platelet crashes. My prospects were no different last year. Not only did homeopathic treatment get me quickly out of my hole, within a couple of weeks I was off prednisone.

The biggest change with homeopathic treatment is that I feel physically great. I've been longing to get that feeling back and I am there now. Most here are all to familiar with the fatigue and lack of energy in a platelet crisis. Rather I feel completely normal as if I never had an ITP autoimmune condition. And frankly that is the way I had felt for 15+ years after my splenectomy. So 2011 to present has been a big learning experience for my ITP.

And I should repeat the fact that I avoided going to the hospital at least 7 times in that period since 2011 against my GPs urging. That would have meant lots of ivig and my hema would have been pushing for a go at rituxin.

So to suggest that had I done nothing back in February last year and everything would have worked itself out ... well that is very optimistic thinking. These platelet crashes are not just some low numbers below 50k or 100k when you first are diagnosed with ITP. These were full on autoimmune responses that were out of control. I hope that puts some context on things.

cheers,

john

Thanks John - yes April helped a number of people here didn't she.

My count has been ok, not normal, since WinRho in 2002 so I just try to be cautious if a med is suggested for something. Like I said, I'm using homeopathic to try to keep from getting sick/flu.

Glad you are doing well!

Hello!

I was diagnosed with ITP last year and went on prednisone for 5 months. My platelets then dropped again to 60k (though the hematologist said this may have been because I had a cold), then back up to 80k at which point I decided to try a gluten free diet. I've been on this for a month with only a few slip-ups and I don't really notice a difference in terms of how I feel. My recent blood work had me again around 60k. To me it seems like gluten may not be a factor. Does anyone have any insight into this? Should I wait longer before jumping to any conclusions? I generally eat a healthy diet otherwise. I was thinking of maybe trying to go off dairy...but I do love cheese and yogurt!

Thanks for any feedback!

bekosie,

If you have a gluten intolerance, you would know within 2-3 weeks of going gluten-free. After a month or so you would notice how calm your gut is without gluten. And when you try to reintroduce gluten to your diet, you would notice the tight stomach, bloating and gas (sorry no better way to describe it) every time you indulged in a glutenous food.


My 13-year old daughter figured it out on her own and did not need any coaxing to convince her that she should avoid gluten.

So if you are not seeing any of this, that's great. You likely are not sensitive to gluten and you would have no inflammation issues within your gut when you consume it.

Here's a little humour for your day.

www.youtube.com/watch?v=FDh_cTOive8

cheers,

john

gluten.net/wp-content/uploads/2013/09/allergies-and-intol-06-2011.pdf

This link to a pdf tells the difference between Celiac disease, gluten allergy, and gluten intolerance. The side effects can be so vast I'm sharing because it blew me away!

I've had ITP (dianosed anyways) for about a year. I have gone gluten, dairy, white sugar and artificial sweeteners since the end of January. Its hard to tell if its helping or not since I also get the N Plate shot to keep me in the normal range but I definitely feel better and have been shedding some extra lbs as well. Its hard to pinpoint anything exactly. I also have stayed away form all alcohol now and have tried to put as much kale in my morning smoothies as I can stand.
My numbers will widely swing from a low of 5,000 all the way to 532,000 last week.

Wow - a count that high could be dangerous. Are you on a steady dose?

Thanks for replying. I'm glad I found this website. I was actually down to 5,000 in mid March. I was suffering from nose bleeds and mouth blisters etc. But I ended up having a seizure and ended up in the hospital for a few days. I was given platelets to get my counts up and was prescribed anti-seizure meds. When I checked out from hospital my count had climbed up to around 200,000. A few days later at my Hem. doctor, the count was down to 140,000 (still great in my book) and i had N Plate shot of 3. The following week I has at 96,000 and again given N Plate shot at 3. Last Weds my count was at the 532,000 count so no shot.
I'm so confused by the last few months because the diet seemed to be working and maintaing a normal level, then I noticed a slight fever for 2 nights and back in early March. As soon as that happened my numbers started to tank.

I'm sorry to see that John Pinette passed away this week. He was a very funny stand up comedian.

I went for a preop today for a little knee surgery next week. I haven't bothered with a count since last winter (when I hooked up with April and started homeopathic treatment with her). What a Godsend this was. My platelets crashed twice down to 5k last winter and I thought my days were numbered avoiding Rituxan. But we found a way out and many thanks to April.

My count was 238k this morning. I feel great, physically charged and totally normal. Best of all I don't think about my ITP day to day. Just the odd occasion which is a great sign I am back to normal.

Still gluten free and trying to be as good as possible with diet and nutrition. Less sugar the better.

cheers,

john

Thank you for this post. My number is around 700. I was diagnosed this year but have had the low platelets for 3. Anyway, I am Being monitored every 3 months. My hemo told me there is nothing I can do and I feel like he is just waiting for me to get down to 500 so he can treat me. Well, that does not sit well with me. At the urging of my friend, I have cut gluten. It has only been 1 week, but I have already noticed a difference in my digestive track. I have a gastro appt in June, so I'll see if I officially have any allergies or other intolerances. I'll see in July if it affects my platelets. I am encouraged by your post!

(I don't know the right way to explain the #, if it is 000's or 00's)

I'm guessing your number is 70,000 or we just say 70 which is an okay count and nobody would treat at such a count. So your doctor is correct just to monitor you.

Good luck with the diet.

Mwalk:

Life style changes for the better are never a bad idea and going gluten free is a good start. I've done it myself and it did make a difference in how I felt physically.

Your count, if it is 70,000, is great by most standards and nothing should be done right now. Monitoring is the best way to go medically at this point. It's a much better alternative than treating when it's not necessary.

Mwalkkernc,

Its great that you are taking some proactive steps to manage your ITP. I wish I had been more knowledgeable about my condition years ago. The best thing you can do is mitigate all suspect allergens from your environment. It will help in the long run. Gluten (intolerance) is likely just one of many triggers that may be present in your circumstance, so you have to be vigilant.

I'll give you a couple of examples. I was doing a lot of garden work lately (my knee is great BTW recovered really well and I am 100% on it now). I have long suspected that I have a serious issue with juniper, and we have a lot of it in our garden. Well I broke out big time recently (after some heavy pruning) and I realized that I have to watch this closely. I had a very strong reaction last week to my contact with juniper bushes and it wore me down (low energy for a few days). I took my constitutional remedy (homeopathic speak) and it helped me get over it. I was then doing some home reno and took on quite a bit of dust from demolition work (dust is another allergen that I react to quite strongly) and that set me back some more. The point is I am aware of these problem allergens and it is important to not the let them pile on (because your immune system will start to ramp up a lot to fight them).

All this for someone who, at one time, did not think he had any allergies. My wife and son have hay fever and I have watched them suffer in the spring /summer many times. Well now I get my own and it seems my immune system is reacting with an increasing severity to all these allergens (which I was never really cognizant of).

The point is you really have to pay attention to any allergen that causes you grief. It won't just be one, or two, or even three that create an ITP crisis, but throw in a fourth (gluten) and maybe a fifth and you may be facing a big problem. There are many lurkers on this board that don't believe in this mechanism for ITP, but I know that is at the root of my ITP problem.

And in the end, I am drug free and normal, despite all the sxxt I have been through the last 3 years (and my family knows this all too well). I don't need a hematologist or whoever to tell me otherwise. I know what I know. That's the beauty of it. I am beating it and it feels GREAT!.

cheers,

john

Ahh ..., gluten. I just wanted to say that I have noticed a reduced reaction to gluten when I indulge, this after 3+ years of being gluten free. Inevitably, someone bakes something here at home and it is too tempting not to indulge the odd time. Well, I've noticed that my reaction is now much more muted. Initially when I went gluten free, I had always noticed a very tight stomach immediately after consuming some gluten and severe bloating for days afterward. Not so much anymore. Funny thing is my daughter has had the same experience. So I don't think it is just me. That won't change my eating habits though. I will still remain basically gluten free.

I still see the same skepticism towards allergens as an issue for ITPers. It will just take time, perhaps a long time, for ITPers and the medical community to catch on. Imagine if you had problems with more than one allergen and you constantly exposed yourself to these unknowingly. How can that be good? Your immune system is constantly being stimulated and yet there is no association or link to this problem. If you were to keep ignoring this issue over the long term, I am sure this can decimate one's health. JMHO. What do I know?

I went for a physical last week. I should get my recent count any day and will update.

cheers,

john

John,
Thanks for writing in and keeping the Gluten subject up there on the boards. I wanted to avoid gluten while I was in remission to avoid low numbers, but I forgot. And there is always a lot of bread in my house. So now I have crashed. I have 3 months while I am away to avoid gluten and hopefully let my numbers climb back to normal. We will see.

Here is an interesting article about the connection between gluten and Roundup. I have always avoided GMO foods partly due to how much roundup is used on these crops. Now I find out that it is used on wheat and cane sugar! Notice in this article how fish exposed to roundup come down with a celiac disease!

www.ncbi.nlm.nih.gov/pmc/articles/PMC3945755/

Notice this is a gov't site, not from what some may call radicals. This may be an important link for many of us who have all sorts of health problems.

Oh and PS the gov't has just approved higher levels of roundup residues allowed in our food!

More about glyphosate (Roundup) and gluten sensitivity.

www.alternet.org/food/meet-controversial-mit-scientist-who-claims-have-discovered-cause-gluten-sensitivty

And people wonder why cancers and autoimmune disorders are so rampant.

An intolerance is different than an allergy.

Is it possible that an intolerance is caused because a child was given gluten too young, when the body wasn't prepared/matured to tolerate it?

Just a thought as I know someone who was given orange juice too early when her system was not able to tolerate the acid. Any citrus is a no-no now.

I think that's very possible, Melinda, but no one advises that and people just don't know. Plus, one person may be able to tolerate something and someone else may not.

One example - soy based baby formulas. I know you've read this before (I posted it), but there is a lot of evidence of a link between soy formulas and Graves Disease. My daughter that has Graves was the only one of my babies who drank soy formula (suggested by her pediatrician). Many babies have had soy, but only a percentage develop Graves. Many can tolerate it, some cannot. Those with a genetic predisposition or who have an intolerance to it have the problems. She couldn't tolerate dairy as a baby and still can't. I believe that certain foods can cause all sorts of problems....most of us just have to figure out which ones those are in our particular cases.

Interesting thought Melinda. I know in traditional Indian culture, a child gets no grains until he first gets a tooth.

Sandi wrote: I think that's very possible, Melinda, but no one advises that and people just don't know. Plus, one person may be able to tolerate something and someone else may not.

Sandi that is quite obvious. Of course no one advises - if they did my friend wouldn't have had orange juice at such an early age and today would be enjoying a grapefruit for breakfast. Her siblings were given orange juice at the same age she was first given it and none have an intolerance. Not sure how to get doctors to advise.

No one advises boys and men to check themselves for breast cancer or testicular cancer so they don't know to do it. That's another example of not being advised - this should be brought to the attention of parents when their newborn son goes in for check ups, but it isn't.

You can use the wording "one person may be able to tolerate something and someone else may not" for anything, about anything. It goes along with what we say about ITP treatments, what works for one may not work for the other.

I just don't think we can say one food is evil because there are people intolerant to it.

Ananta that is interesting about children not being given grains until the first tooth comes in. Sounds like a good idea.

Ha, I was actually agreeing with you, Melinda. I guess it just didn't come off that way. I think that the doctors do advise mothers about when to begin certain baby foods like cereals and juices, etc. for the most part. The problem is that the rules keep changing. With each of my kids, they suggested different times as to when to start those foods. As far as real food though...a lot of Mom's just mash up the dinner they make when the kids start to get teeth and feed the baby that. Some do it sooner. I have no idea what the food rules are these days. But what I meant was that there are no hard studies about what foods should really not be given to little ones. Honey is the only thing that seems to be strictly avoided and is well known.

I didn't mean to allude that no one should eat gluten. The world is full of it and it's not going away anytime soon. But I also believe that there are more sensitivities to it than most people realize and that people just don't make that connection (or deny that it might be a problem).

What is it with people. Why is a gluten free diet such a big deal. You either decide to do it because you feel better, or you don't (celiacs aside). The figures cited saying that only about 6% of the population are probably truely affected. I think that is a gross underestimate and there has been genetic research to suggest otherwise.

At no time was I better reminded of the downside of a gluten free diet when in Italy this summer. I never touched a pizza the entire time there and they looked really good. Every single one.

And BTW, every time a Girl Scout comes to our door, we buy cookies. At least now I can indulge in some without consequences. That's what its all about Charlie Passy.

For your amusement.

cheers,

john


www.marketwatch.com/story/has-gluten-free-jumped-the-shark-2015-01-09?siteid=bigcharts&dist=bigcharts


Has gluten-free jumped the shark?
By Charles Passy
Published: Jan 9, 2015 8:14 a.m. ET

Even the Girl Scouts are in on the trend

Yes, the scouts have joined the gluten-free bandwagon — specifically, with two newly unveiled cookie varieties: Toffee-tastic and Trios. (Last year, they also test-marketed a gluten-free chocolate chip shortbread cookie)I suppose this is welcome news for those who embrace the gluten-free lifestyle, whether by necessity or by choice. But I’m inclined to see this as proof of a dietary trend that’s gone too far.

At this point, it’s hard to think of a food or beverage that hasn’t been reformulated as gluten-free. (Gluten is found in wheat, rye and barley — and “any foods made with these grains,” according to the American Diabetes Association.) Trader Joe’s — no stranger to all things gluten-free — even joked about it by announcing it was selling 99-cent gluten-free greeting cards . It adds up to big business: Sales of products that carry a gluten-free label are up 16.4% in 2014, hitting $23.3 billion, according to a Wall Street Journal report.

But I, for one, am not buying into the trend, even if it’s estimated by market researcher NPD Group that some 30% of Americans are cutting back on gluten or avoiding it completely. Then again, why should I be giving up my beloved foods that contain wheat (or rye or barley, for that matter)? I don’t have celiac disease, a digestive disorder that all but demands a gluten-free diet. Of course, there are other medical conditions that may be helped by going gluten-free — “Research is mounting that gluten-free diets may be effective in treating or reducing symptoms in patients with autoimmune diseases,” says Lauren Graf, a dietician with New York’s Montefiore Medical Center — but I’m not afflicted with those maladies, either.

And let’s be real: I’m not all that unusual. In fact, it’s the other way around. The folks who can’t handle gluten are in the minority. Celiac disease, for example, affects just 1 out of every 133 people, according to the National Institute of Diabetes and Digestive and Kidney Diseases. And while it’s unclear how many others can’t properly digest gluten, it’s not, say, every third or fourth or even seventh person. At best, according to Time magazine, it’s one out of every 16 people, or about 6%.

So why are so many of us going gluten-free? In a word, it’s all about fashion, say those who study dietary trends. Remember when fat was bad and we all started devouring fat-free cookies? Or when eggs (or, at the very least, egg yolks) were the almighty evil and the egg white omelet became king of the breakfast table? Well, gluten is the forbidden fruit of today — even if there’s no real reason for many of us to avoid it. Just as there was no real reason to avoid eggs — indeed, Harry Balzer, chief industry analyst of the NPD Group, says they’re now a hot food again, prized for all the high-quality protein they deliver.

Still, if you want to go gluten-free — just because of some perceived dietary bogeyman — what’s the harm? It’s your choice, right?

Yes, it is. But I’d argue there’s risk in chasing what amounts to culinary fool’s gold (albeit, not the Elvis kind of culinary fool’s gold). For starters, you’re paying more for the privilege. A lot more. One study found that gluten-free products cost 242% more than their regular equivalents . And to top it off, you’re sacrificing taste (and texture): I’m sorry, but I’ve never had a gluten-free product that registered as anything but sawdust-like in my book. And I say this not to make those with true gluten issues feel bad, but to acknowledge the simple reality. Even celiac sufferer and Philadelphia comedian Valerie DiMambro acknowledged as much in a 2013 story. As she wrote, “I don’t need everyone’s constant reminders that everything I eat tastes fantastically disgusting. I know this. I’m eating it. All. The. Time.”

But here’s the kicker: If you don’t need to go gluten-free and yet you insist on doing so, you may actually be doing your body a disservice. That’s because gluten-containing foods have a lot of the stuff — fiber, protein, B vitamins and minerals — that we need, according to Meghan Garrity, a dietitian with New York’s Montefiore-Einstein Center for Cancer Care. Even worse, says Garrity: Gluten-free products are often “higher in calories and may be overeaten due to a false notion that they are healthier.”

Perhaps such a message is finally getting across. NPD Group says that after years of growth in the number of Americans embracing the gluten-free lifestyle, there are signs the number may be stabilizing, if not declining. In that regard, perhaps the Girl Scout lineup of gluten-free cookies is less a buzz-worthy piece of news and more an indication that the gluten-free movement has finally jumped the shark.

But all of us who have proudly stuck by our gluten shouldn’t get too excited. As soon as one health-minded dietary trend dies out, another takes its place, says Balzer of NPD Group. (He thinks GMO-free foods could be the next big thing.) I say we ignore the trends and head to the local greasy spoon for a burger and a Coke.

My mom read the same thing and so that's what I'm trying. I would tell you my numbers but I haven't had a CBC lately, but I've had less headaches and stomach pains, but cross contamination is a big issue. So is finding cheap but healthy foods. It's worth a shot though.