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TOPIC: Celiac, gluten and ITP

Celiac, gluten and ITP 2 years 5 months ago #57286

  • penlyn63
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Just a quick question:

Been seeing some posts regarding gluten issues affecting platelet count so I've just started to do more research. I was diagnosed with celiac disease at the same time they discovered my ITP. I've never had any "typical" issues (digestive) that most with celiac experience, and actually scoffed when they told me I tested positive for it. Now I'm wondering if it IS affecting my platelet count.

I'm 5 weeks out of my Rituxan treatments and my count is going up and down weekly. I really don't pay much attention to the gluten I eat since it never has physically affected me, but decided this week to really avoid it to see if it affects the count.

Anyone have any experience with this?

Thanks!!

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Celiac, gluten and ITP 2 years 5 months ago #57295

  • eklein
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No experience here but of course, opinion :) Celiac is very serious business so it might be smart to get a second opinion on that diagnosis.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Celiac, gluten and ITP 2 years 5 months ago #57299

  • RiseAbove
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My husband is celiac and we have dealt with it for over ten years. I am non celiac gluten intolerant for the past four years. Even if you have no symptoms eating gluten, regardless of ITP, you should not eat gluten as there is an increased risk of GI lymphoid cancers when celiacs continue to eat wheat. It is estimated that each time you eat any gluten it takes six months for your gut to heal. Also, 2/3 of our immune system is in the gut. With ITP also, it might be risky to keep exposing your immune system to a known problem. I have no idea if it would help your platelets but from everything I have seen and read, your immune function in general at least, would improve.

Did you have a confirmatory biopsy? If not, it would be a good idea while you are still eating wheat daily.

FYI, many of the celiacs we know had a presenting symptom of fatigue and no gut issues. Also, many of them were overweight and lost weight going off gluten BC they actually started absorbing nutrients once their gut healed and they stopped feeling hungry all the time.

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Celiac, gluten and ITP 2 years 5 months ago #57300

  • wquine
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I heard the confirmation biopsy is painful, is that right? I wonder how many of us are sensitive to gluten or have some kind of correlation?

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Celiac, gluten and ITP 2 years 5 months ago #57303

  • penlyn63
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I did not have the biopsy, just the serologic test (tTG-IgA.) I have never had any symptoms of celiac or gluten sensitivity. I don't go out of my way to eat or not eat it. When I was first diagnosed I stayed away completely, but since I didn't know I was celiac and had/have no symptoms, it seemed silly. Cutting out gluten seemed to make no difference to my everyday life, digestive or otherwise. It wasn't until I really started having issues with the ITP, the steroids stopped working and I had the Rituxan treatments that I started to consider it's possible affect on me.

I am, in no way, trying to make light of it. I understand it is a serious issue for many people. It just hasn't seemed so for me. But anything I can do to keep my platelet numbers up I'm willing to try!

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Celiac, gluten and ITP 2 years 5 months ago #57312

  • rhoda
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so if a person were to cut out all gluten as a test, how long does anyone suppose that it might take to see any results? what might be an expected time frame?
2 weeks? 6 months?

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Celiac, gluten and ITP 2 years 5 months ago #57315

  • Hal9000
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penlyn, I too wonder of a possible link to ITP. For the simple reason celiac disease, or just gluten sensitivity/intolerance, is related to one's immune system. As I noted in an earlier thread, as I have discovered, Dapsone is used to treat both ITP and gluten sensitivity/intolerance.

I've had a hairline dermatitis issue for many years. As a test to rid myself of the problem, I've been gluten free and nut free for the past six days. I've tried this test, and wheat elimination, a couple months ago but only for 3/4 days. No apparent success then. Trying a longer period this time.

To my surprise, the dermatitis seems to be going away with the longer test. Oh boy. More testing to do. Yet to find out if culprit is gluten, or nuts, or both.

Everyone is different. The amount of time to have a curative effect from gluten elimination probably varies quite a bit. From a quick search, I found this gluten info. It talks about some folks having a dermatitis issue and others have an intestinal issue. Not sure of accuracy.

www.gluten.org/resources/dermatitis-herpetiformis/

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Celiac, gluten and ITP 2 years 5 months ago #57335

  • Hal9000
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Rob, thanks for that. Celiac stuff is totally new/unfamiliar to me. I just presumed gluten intolerance might be the totality of the problem since I have zero gut issues. Going gluten free for awhile is just a test, which is still in progress. Still could be some other issue. Waiting for a flair up.

LOL, treating Celiac with Rituxan sounds pretty harsh. Nevertheless, my Rituxan treatments for ITP start Friday. Should I ask my doc for some Dapsone too, LOL, just kidding. If gluten is my problem, I am going to feel very lucky to be dealing with it now, before starting Rituxan. Very lucky.

Just off hand, not sure why I would seek a diagnosis of Celiac. Problem seems to be limited to my dermatitis. That link I gave in my last sounded like it was an 'either or' issue. Either one had a intestinal problems or one had a dermatitis problem. You're familiar with Celiac disease? Treating it?

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Celiac, gluten and ITP 2 years 5 months ago #57347

  • Rob16
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It can take a very long time for dermatitis herpetiformis to respond to a gluten-free diet. If you have DH, you also have celiac disease, even though you may be symptom-free, and early treatment may prevent secondary problems from developing. If you suspect DH, you should be tested. In this case, dapsone may be the preferred treatment for ITP, and the additional risk of Rituxan unjustified.

www.dermatitisherpetiformis.org.uk/
It is important to appreciate that a gluten free diet may have no effect on the rash for approximately six months and sometimes, even longer. It takes this length of time before patients can start to reduce their drug requirements and approximately 2 years before they can discontinue drugs completely. It is also important to realise that these times are only achieved if the diet is absolutely strict. Even small amounts of gluten may result in patients not being able to stop their drugs.

Thus, because the drugs control the rash quickly and the gluten free diet does not, it is normal practice to start both drugs and diet together. After six months, the dose of drugs can be slowly reduced. Dermatitis herpetiformis is a persistent disorder (and because these patients also have coeliac disease, even if mild), the diet must be considered to be life-long.

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Celiac, gluten and ITP 2 years 5 months ago #57369

  • Hal9000
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I'll have to get up to speed on this Rob.
Just off hand, do you know of any other skin dermatitis's which are triggered/inflamed by sugar consumption.

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Celiac, gluten and ITP 2 years 5 months ago #57371

  • Rob16
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I don't have any special knowledge other than what I get from googling.

Candida rash can be caused by elevated blood sugar. Try googling SUGAR RASH. Also DIABETIC RASH.

Good luck tomorrow on the Rituxan.
Low-dose or standard?

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Celiac, gluten and ITP 2 years 5 months ago #57375

  • Hal9000
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Blah, I found a web page with CD testimonials where many claimed that sugar triggered their dermatitis. Oh my. Sounds just like what I'm experiencing. CD is sounding more as the culprit then ever.

Thanks for that. Paper work says 100 mg dose :)

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Celiac, gluten and ITP 2 years 5 months ago #57382

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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There is a lot of info out there about how bad sugar can be for health. I've cut down on it big time.

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Celiac, gluten and ITP 2 years 5 months ago #57385

  • Sandi
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The PDSA just posted this on their FB page today:

New research provides further evidence of the important role that gut microbes play in health - by revealing they alter host gene expression in a diet-dependent manner. Using mice, the researchers show a Western diet prevents many of the gene expression changes of a plant-rich diet.


More at:
www.medicalnewstoday.com/articles/314369.php

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Celiac, gluten and ITP 2 years 5 months ago #57387

  • CindyL
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Sandi, is there anything specific I look for to find the FB page? I searched it and came up with 2 hits.

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Celiac, gluten and ITP 2 years 5 months ago #57393

  • Sandi
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You have to search the Platelet Disorder Support Association. They don't go by PDSA.

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Celiac, gluten and ITP 2 years 5 months ago #57412

  • Hal9000
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Stuff is definitely bad. Metabolic syndrome, diabetes, increased aging rate, all come to mind - and now immune system.

Did you hear the recent statistic that the average life expectancy (for Americans) is falling for the first time since 80s (AIDS epidemic) ?

Seeing the rapid rise in diabetes over the past few decades, I can believe it. This is going to screw up social security life expectancy tables going forward.

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Celiac, gluten and ITP 2 years 5 months ago #57413

  • Sandi
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I'm aware of all of that. I'm pre-diabetic myself and am not even overweight. Too many years in steroids, I guess. If you're up to a lot of reading, read my thread in the Natural Treatments Section titled Autoimmune Disorders Exploding. It covers many things.

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Celiac, gluten and ITP 2 years 5 months ago #57421

  • Hal9000
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I've skimmed through that thread before.

You know, just this past week I mentioned that very subject to my niece - who is now a Navy doctor. Usually only see her around holidays. I think she is now doing residency as an anesthesiologist. Long hours.

I forget her exact response but it was something along the lines of: don't know much about that, anesthesiology is my bag.

I try to feed her good ideas ;)

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Celiac, gluten and ITP 2 years 5 months ago #57457

  • Sandi
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My daughter has Graves and diet, especially going gluten free, makes a huge difference for her. If she gets sloppy with eating, her eyes start to swell. They get better again when she sticks to a strict diet. She works full time and is in nursing school, so it's hard for her to stick to it. Between her experience going gluten free and my experience, we are both believers.

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Celiac, gluten and ITP 2 years 5 months ago #57461

  • RiseAbove
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To address an earlier question in the thread, the biopsy to confirm celiac is not painful, it is done under anesthesia during an upper endoscopy. It is important that the doctor take six biopsies which is not commonly done in the US but my understanding is that in Europe where they have been aware of celiac longer, they have found that when only a few spots are biopsied, celiac can be missed. On a side note, ALL kids in Italy are screened for Celiac.

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Celiac, gluten and ITP 2 years 5 months ago #57462

  • wquine
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That's real interesting about Italy. Thanks for answering RiseAbove.

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Celiac, gluten and ITP 2 years 5 months ago #57490

  • Sandi
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Importance Epidemiologic studies have suggested that higher intake of added sugar is associated with cardiovascular disease (CVD) risk factors. Few prospective studies have examined the association of added sugar intake with CVD mortality.

Objective To examine time trends of added sugar consumption as percentage of daily calories in the United States and investigate the association of this consumption with CVD mortality.

Design, Setting, and Participants National Health and Nutrition Examination Survey (NHANES, 1988-1994 [III], 1999-2004, and 2005-2010 [n = 31 147]) for the time trend analysis and NHANES III Linked Mortality cohort (1988-2006 [n = 11 733]), a prospective cohort of a nationally representative sample of US adults for the association study.

Main Outcomes and Measures Cardiovascular disease mortality.

More at:

jamanetwork.com/journals/jamainternalmedicine/fullarticle/1819573

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Celiac, gluten and ITP 2 years 5 months ago #57502

  • Hal9000
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Any success with better counts and going gluten free penlyn63 ?

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Celiac, gluten and ITP 2 years 5 months ago #57510

  • penlyn63
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Nope. Had my weekly CBC Wednesday, six weeks post final Rituxan treatment and 2 weeks sans gluten, and my count went down. I've been going up and down since I finished the treatments but I'm still at 70, so things could be worse. Still disappointed as I was up to 109 last week. Am going to continue the gluten free. Am also down to 7.5 mg of prednisone, after weekly decreasing from a high of 80, so am hoping I don't have to deal with any withdrawal issues. So far so good!

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Celiac, gluten and ITP 2 years 5 months ago #57512

  • Rob16
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Penlyn63,

I noted from an earlier post that you have been on prednisone for 2 years, and now you say you have reduced your dose to 7.5 mg. Further withdrawal from prednisone could become very difficult, and must be taken VERY SLOWLY. Here is why:

Prednisone suppresses natural production of cortisol (the natural steroid hormone that prednisone mimics). Your adrenal glands have most likely atrophied from two years of inactivity. 5-10 mg/day of prednisone is equivalent to the normal production of cortisol. So far, you have only reduced the steroid down to normal levels. Further reductions will cut into the necessary steroids your body needs to keep going, and your atrophied adrenal glands will have trouble keeping up with the demand. Thus you will be suffering from real adrenal insufficiency, until your adrenals recover enough to take over, which can take months.

Here is a link to a more detailed discussion I previously posted:
pdsa.org/forum-sp-534/7-treatment-general/29130-steroid-tapering-secondary-adrenal-insufficiency.html

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Celiac, gluten and ITP 2 years 5 months ago #57514

  • penlyn63
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Thanks Rob. I am aware of the withdrawal issues and both my doctor and I are holding me at 7.5 until we can assess any symptoms I may have etc. I went from 10 to 7.5 just 5 days ago. I've been fine thus far, but I am aware it may take longer or a lower dose (down to 5 or so) before I have any reactions. I go back again next week (for my weekly CBC) and will not change anything until my Dr is aware.

Thanks!!

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Celiac, gluten and ITP 2 years 5 months ago #57522

  • Hal9000
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Up and down? Sounds like wait and see time.

I dunno, couple things come time mind barring good results. Might ask your doc if he thinks it would be a good idea to treat with Rituxan again/later now that you are going gluten free.

If that goes good, might go a step further. Ask him if he has ever treated someone with Dapsone and Rituxan.

Alternatively, maybe he would be willing to treat with you with Dapsone while doing the wait and see.

Also, keep in mind Robert's success story with NPlate 6mo after taking Rituxan (and Dapsone, and etc)

What do you think?

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Celiac, gluten and ITP 2 years 5 months ago #57529

  • RiseAbove
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Penlyn63

I have no idea if going gluten free (GF) will help your platelets, but if you really want to try it I would give it a minimum of a month but longer is better. Many people I know with a wide variety of autoimmune diseases note improvement being GF. Many notice an improvement in energy. (I went off gluten several years ago related to joint pain and fatigue I was having and remain GF BC those issues went away off gluten).

As for going off daily steroids, I agree with others, take it slow, even going down 1 mg at a time if needed. My MIL has a different autoimmune disease, took daily pred for years and did much better going off it when they slowed the taper way down. The health care folks know how to taper people from a clinical stand point but most of them don't know what it feels like to do it so keep the communication going with your doc.

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