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Thrombocytopenic Purpura and Celiac Disease

The following was prepared by Ron Hoggan:

I have only found three reports in the literature suggesting a coincidence of the two above-mentioned conditions (1, 2, 3). And yet, I was recently contacted by Karen Brinser, whose mother had been diagnosed with celiac disease and had a section of her bowel was surgically removed due to a small bowel adenocarcinoma. Karen indicated she had ITP, and asked if there could be any connection with celiac disease.

I responded with the three citations to journal articles, along with some comments from Cooke & Holmes indicating that the platelet count could rise in celiac disease (4) (page 122). I seem to have missed the comment, later on the same page, that the platelet count can also be considerably diminished in the presence of granulopenia. They go on to say that granulopenia is not uncommon in celiac disease, and approximately 10% of celiac patients have total white cell counts less than 3500 per cmm and approximately the same percentage have either a neutropenia of less than 3000 or a lymphopenia of less than 1500 per cmm.

Karen took the initiative and posted to the celiac listserv asking for responses from those who have experience with both celiac disease and ITP. One parent wrote about a daughter who had previously experienced ITP, but had regained her health since the diagnosis and treatment of her celiac disease.

A middle-aged man who had suffered from ITP during the 1960s and 1970s and was treated with corticosteroids, was diagnosed with celiac disease in 1980. His ITP also seems to have resolved.

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A woman was diagnosed with both celiac disease and ITP at the same time, three years ago. Her gastroenterologist thought the two were related as both are auto immune diseases.

Another woman had two severe bouts with reduced platelet levels occurring at ages 38 and again at age 45. At age 59 she was diagnosed with celiac disease and now blames the celiac disease for a variety of health problems, including her bouts with abnormal platelet levels.

Another womans ITP eventually led her astute (my opinion) doctor, after excluding leukemia, in the direction that led to the diagnosis of her celiac disease.

A father discussed his own and his daughters symptoms of purpura, as well as some associations between celiac disease and damage to capillaries. He structured some very thoughtful, compelling arguments suggesting that abnormal WBCs and platelet counts may well be associated with celiac disease. He also indicated that his symptoms had abated on the gluten-free diet.

Another parent had one daughter diagnosed with celiac disease. When their other daughter started to develop symptoms of celiac disease they put her on a gluten-free diet. At age five, they re-introduced wheat to her diet to see if she could tolerate it. She was subsequently hospitalized due to ITP. At the time, the parents thought the ITP might have been due to a drug reaction. The daughter was returned to the gluten-free diet due to other celiac-like symptoms, and has not had any significant health problems since. All these anecdotal reports, but in combination with Cook & Holmes comments, and the three journal articles, the possibility of a connection seems reasonable. It is at least a connection worthy of investigation, as ITP can be deadly, as can some of the other sequelae of celiac disease. Given the delays between presentation of ITP, and diagnosis of celiac disease, the former could prove to be a valuable indicator of the possibility of the latter.

If you have questions for Karen Brinser, she can be reached at: brinser@lancnews.infi.net

Sources:

  • Kahn O, Fiel MI, Janowitz HD Celiac Sprue, Idiopathic Thrombocytopenic Purpura, and Hepatic Granulomatous Disease. An Autoimmune Linkage? Clin. Gastroenterol. 1996 Oct;23(3):214-216.
  • Sheehan NJ, Stanton-King K Polyautoimmunity in a Young Woman. Br. J. Rheumatol 1993 Mar;32(3):254-256.
  • Stenhammar L, Ljunggren CG, Thrombocytopenic Purpura and Celiac Disease, Acta Paediatr Scand, 1988 Sep; 77(5):764-766.
  • Cooke W & Holmes G (1984) Celiac Disease Churchill Livingstone, NY.
  • Nelson E, Ertan A, Brooks F, Cerda J, (1976). Thrombocytosis in Patients with Celiac Sprue. Gastroenterology 70, 1042-1044.
  • Croese J, Harris O, Bain B,(1976). Celiac Disease. Haematological Features and Delay in Diagnosis. Medical Journal of Australia 6, 335-338.
  • Bullen A, Hall R, Brown R, Losowsky M, (1977). Mechanisms of Thrombocytosis in Celiac Disease. Gut. 18, 962.

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10 Responses:

 
Catherine
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
03 Dec 2007 12:59:08 PM PDT
Hi there. I need help. My daughter and I both have celiac disease, biopsy proven and we're still have many problems. I'm more concerned about her right now. She is getting what seem to be blood blisters in her mouth, during or after exercise or a stressor of some kind. She has severe chronic fatigue and nauseousness. When bruised or cut, it takes months sometimes to clear the injuries up.

Apparently all the blood screens have been done and the doc won't discuss anything further with us. There are no thyroid or autoimmune indicators either.

I need some help.

Thanks so much just for thinking about us.

God Bless,

Catherine

 
doctorx

said this on
09 Oct 2014 11:04:37 AM PDT
Change to another doctor.

 
Jennifer
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
22 Jan 2009 12:06:30 AM PDT
Catherine-
I was reading your comment about your daughter. I was diagnosed with celiac disease about 2 years ago. I was still getting very sick and still had skin issues even while on my gluten free diet. I went through EVERYTHING i used and found out that over half of my shampoos, lipsticks and makeup had gluten in them. I don't know if this information will help you or your daughter any, but I never thought to look at any of those things when I was first diagnosed. Another thing I wasn't told was to avoid foods that were high in fat, such as peanuts. The doctor told me that due to my intestines being damaged that I couldn't digest high fat foods. I was eating a lot of peanuts and within a day or so of eating them I would be incredibly sick to my stomach. I still eat them, but since I have cut down on them I no longer have a problem. Also, I had ITP when I was a toddler. I don't remember much other than being hospitalized, but I was told I had bruises everywhere that wouldn't heal and it had to do with my decreased platelet count. I hope this information can help you out. Good luck to you and your daughter.
Jennifer

 
Catherine T.

said this on
10 Oct 2013 7:19:38 AM PDT
I too, had ITP for years, then the doctors said I had Lupus SLE...sick in bed for years while my kids were toddlers... this went on for 1/3 of my life! One day I had a peanut butter cup and I went into anaphlaxic shock. I was referred to an allergist and found out I was celiac and allergic to most grains and any food that grew in the ground like peanuts, potatoes, carrots...etc...I quit eating all the food I was allergic to and I have my life back. I almost had a nervous breakdown realizing that it was the food all along....I am so healthy ...I work full time, exercise, eat only organic (no chemicals)...but I had a set back about 5 years ago and my hair was falling out and I was bruising again and I asked God to please show me what I was doing that was causing this.....I looked at my shampoo and conditioner and it had WHEAT GERM in it.....I started to cry when I realized that all the stuff I was putting on my body was full of gluten and wheat....carrot juice...soy.....jezzzz....Once I got the outside and my inside free of gluten I was on the road to a new life!!! I am almost 60 years old and I have never felt better in my entire life!

 
Jane
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
10 Apr 2010 6:25:49 PM PDT
I was diagnosed with Celiac Disease when I was 47 years old. Now, eight years later, I look and feel like a new person. Yesterday I accidentally ran across a picture of me with purpura my daughter and I pointed to it at the same time, recognizing it as the horrible rash I used to get on most vacations that covered my legs. Until now, I didn't know what it was called or what caused it, and tried to rationalize it by saying that I took more aspirin on vacations. Your article helped me to realize that this was just another symptom of celiac disease. Those symptoms were made worse during vacations because we often ate quick and inexpensive foods like sandwiches, pizza, crackers and cookies. Now I'm wondering if the increase in pain during those vacations wasn't due to internal bleeding caused by ITP. The good news is that I haven't had any of those disfiguring rashes since I've been gluten free.

 
Catherine A. Becker
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said this on
30 Dec 2011 1:05:51 PM PDT
Thank you, My oldest daughter had ITP when she was 6-8 years old. Since then a Granddaughter, and three of my 4 children as well as myself have been diagnosed with celiac disease when I was 63. The oldest daughter will not have the testing for celiac disease, she is now 50 years old. Thank you for your information.

 
Pamela Miller
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
08 May 2012 9:20:37 PM PDT
My daughter has celiac disease last year she got off her diet in October of 2011 she got ITP the doctors kept saying there is no such thing...I think otherwise.

 
jennifer
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
12 Jul 2012 9:55:34 AM PDT
Two years ago, my 10 year old presented with bloody noses and bruises all over her body. She began vomitting and had diarrhea almost every day. She had many tests done. They discovered Idiopathic thrombocytopenic purpura. One week prior to this, she was mildly ill. It was August, she had a very low grade fever--around 100. She did not feel like herself for the day and then one week later, she had all of these symptoms. I took her to the doctor for a stomach ache who noticed her bruises and was concerned about the bloody nose. Tests showed platelets at 10,000. Then 2 days later the vomiting and diarrhea began. All testing showed no allergies or celiac disease. I kept a food diary and determined it was gluten. Her Idiopathic thrombocytopenic purpura went away but every once in awhile, if she is exposed to a bit of gluten, she begins with a bloody nose and if there is more exposure--the stomach issues begin--aches, then diarrhea and vomiting. I firmly believe Idiopathic thrombocytopenic purpura and gluten intolerance are linked--it is the case in my daughter though the doctors said then that they were not linked. I knew they were and am glad to see research coming out proving I am not nuts. Hope this helps someone else.

 
Lisarose
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
26 Jul 2012 1:22:05 PM PDT
Hello All!!
At 17 years of age I developed idiopathic thrombocytopenic purpura. I am 47 years old now, and back then the treatment for ITP was prednisone and eventually a splenectomy. I was diagnosed about 20 months ago with celiac disease. I never had the classic bloating, diarrhea, gastrointestinal upset symptoms, I was just very anemic. I did however suffer from chronic ideopathic pancreatitis and frequent bouts of syncope. I eventually had a cardiac arrest and was fitted with a pacemaker. Since going completely gluten-free, my pancreas has settled quite a bit, but I continue to have chronic fatigue and skin rash. Thank you so much to the previous comments because I am going to look into the shampoo soap connection with gluten. At the end of the day, all is well. We are survivors!

 
Kristi Tidwell
Rating: ratingfullratingfullratingfullratingemptyratingempty Unrated
said this on
08 Jan 2015 5:53:52 PM PDT
My son who is 13 was just diagnosed with both ITP and celiac disease. I anxious to see once we start treating the celiac if his platelet level will start to improve. Last time he was checked it was only 42,000. I truly believe there is a connection.




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Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come. If you've not already seen it there's advice and further info here: It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...

Hello again Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside. What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example. You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest. If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember:

Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest. AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.). The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.

I'm sorry that life is so hard right now. Really. I can't imagine working 3 jobs and trying to manage this terrible illness. I think about American society and their obsession with food often. Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies. A loaf of gluten-free bread will last me 4-6 months in the freezer. I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty. I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated. Good luck!

Hi! Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too. Gall bladder problems are often associated with Celiac Disease. Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....