Here Is The Rundown... Can You Tell Me What You Think?

[KathrynB]

Hello! I would be so grateful if I could get your advice. I am a 33 year old female, 5'6 125 lb, and three months ago I began having severe, debilitating abdominal pain, that did not seem to be directly related to foods like dairy, eggs, spice, alcohol, etc. The pain was so bad I had to to go to the ER once after fainting. One of the initial tests, was a blood test for celiac, but only one test, not the full panel. Negative.

I went gluten free anyway, because I had notice how poorly my body reacted to grains (bloating, diarrhea, fatigue). Subsequent tests were cat scan, ultra sound, 72 hour fecal fat test, liver and kidney panel, gall bladder panel, upper scope and Celiac biopsy (had been gluten-free for 3 weeks by then), and blood tests for bacteria, eosinophils, and parasites. Yeesh!

Positive results were elevated eosinophils (a type of white blood cell found in cases of allergy, inflammation, and parasitic infection), anemia, and fat malabsorption.

I also suffer from joint pain, difficulty with memory and concentration, and a recurring rash on my hands. Whenever I google one of my test results or symptoms- Celiacs is the first thing that pops up! But both the initial blood test, then the biopsy were negative... My Dr says he has ruled out Celiacs and wants to do more testing, and I'm willing to go a little further with it, but It seems so classically Celiacs! Man, so frustrating. Oh, and of course, I haven't had a single episode of pain since 1 week after going gluten and grain free. How common is it to essentially "self -diagnose" Celiac's even with negative test results? Would a non-celiac-gluten-intolerance cause elevated eosinophils and significant fat malabsorption?

I travel frequently, and being gluten-free will be very difficult, but not impossible... but what if I'm doing it for nothing? How do you handle explaining to people in your life your diet restrictions without a positive diagnostic result? Thanks in advance for your input! -Kathryn

[bartfull]

Doctors are notorious for misdiagnosing. If going gluten-free has given you relief, it would seem you are at least gluten intolerant. All of your symptoms certainly match.

What does the rash on your hands look like? Does it itch or does it hurt? I ask because although I don't have DH, which IS a celiac diagnosis, I do have palmoplantar pustular psoriasis. PPP only shows up on the hands and feet, looks like white head pimples which then turn into red spots, which then cracks and peels. Although it will itch mildly from time to time, mostly it just hurts.

DH gives you clear blisters and although it hurts from time to time, mostly it itches worse than any itch you've ever known. (I believe it has been called the "suicide rash".)

I would ask the doctor to hold off on further testing (but that's just me) and see if the gluten-free diet brings on more improvement.

And read as much as you can on this forum. This is by far the very best place to get information and support.

Hope you're feeling better soon.

[Skylark]

Hi and welcome. When celiac is ruled out, a LOT of people self-diagnose with non-celiac gluten intolerance. As you are learning, you can get very ill from gluten and still have negative celiac tests. Yes NCGI can cause fat malabsorption from the intestinal inflammation. I wouldn't be surprised if it could cause elevated eosinophils.

You have to stay firm and believe in the health improvement you are getting on the diet. Listen to your body, not the naysayers. As to explaining to people in your life, I say I can't eat gluten and leave it at that. If they press uncomfortably, I say I'm not comfortable talking about my health and change the subject. (Interestingly, I've learned most people pressing for details actually suspect gluten problems themselves.) With family my mom is NCGI and my sister-in-law is just super-cool and feeds me how I need, so happily there's no issues.

[KathrynB]

Oh my goodness! Thank you for replying so quickly! The rash on my hands begins with a maddening itch and tiny raised blister-y bumps, then into larger blisters (with no oozing or pus) which then cracks and peels after about 2 weeks. The whole area looks red and miserable, but the initial bumps are not red. No rash since gluten-free, but before I would get it once every few months.

[beachbirdie]

Hello! I would be so grateful if I could get your advice. I am a 33 year old female, 5'6 125 lb, and three months ago I began having severe, debilitating abdominal pain, that did not seem to be directly related to foods like dairy, eggs, spice, alcohol, etc. The pain was so bad I had to to go to the ER once after fainting. One of the initial tests, was a blood test for celiac, but only one test, not the full panel. Negative.

I went gluten free anyway, because I had notice how poorly my body reacted to grains (bloating, diarrhea, fatigue). Subsequent tests were cat scan, ultra sound, 72 hour fecal fat test, liver and kidney panel, gall bladder panel, upper scope and Celiac biopsy (had been gluten-free for 3 weeks by then), and blood tests for bacteria, eosinophils, and parasites. Yeesh!

Positive results were elevated eosinophils (a type of white blood cell found in cases of allergy, inflammation, and parasitic infection), anemia, and fat malabsorption.

I also suffer from joint pain, difficulty with memory and concentration, and a recurring rash on my hands. Whenever I google one of my test results or symptoms- Celiacs is the first thing that pops up! But both the initial blood test, then the biopsy were negative... My Dr says he has ruled out Celiacs and wants to do more testing, and I'm willing to go a little further with it, but It seems so classically Celiacs! Man, so frustrating. Oh, and of course, I haven't had a single episode of pain since 1 week after going gluten and grain free. How common is it to essentially "self -diagnose" Celiac's even with negative test results? Would a non-celiac-gluten-intolerance cause elevated eosinophils and significant fat malabsorption?

I travel frequently, and being gluten-free will be very difficult, but not impossible... but what if I'm doing it for nothing? How do you handle explaining to people in your life your diet restrictions without a positive diagnostic result? Thanks in advance for your input! -Kathryn

On the one hand, you don't want to focus so much on having celiac that you miss something else that might be going on. A good doc can help flesh that out.

On the other hand, if are feeling better off gluten, that says a LOT!.

You could push your doc to do a full celiac panel, not just one test. Many people will test positive on only one of the commonly used test, so you could conceivably have antibodies, just not the ones your doc tested for.

Also, though the rash on your hands could be contact dermatitis or some kind of eczema or an allergy, it also could be dermatitis herpetiformis. That can only be diagnosed by biopsy done near (not ON) a fresh outbreak of blisters. People who have dermatitis herpetiformis often do NOT show the same intestinal damage that is usually found in celiacs, but a person with DH is still celiac.

Can you get copies of your lab reports and your biopsy report? It would be good to know what it actually says rather than just relying on how your doctor interpreted. If they took too few samples, it's possible they missed damage that might be there.

It's good to pursue the other possibilities, but I wouldn't dismiss gluten problems on the word of this doc either.

[rosetapper23]

The description of your rash is spot-on for DH! If you feel better being gluten free, continue with the diet and chuck the doctors. You may wish to know that you'll need to eliminate iodine, too, for a few months (or until the rash completely goes away), because DH generally needs both gluten and iodine to occur. This means that you'll need to avoid iodized salt, salty snacks (chips, french fries, crackers, popcorn, processed foods, etc.), seafood, asparagus, and probably dairy. Also, the stomach upset you described that drove you to seek medical attention might be attributable to soy. Many celiacs simply cannot digest it, and it can cause tremendous digestive pain. The few times that I ate it before I knew I had celiac, I drove to the hospital because I thought I had appendicitis. They put soy in almost everything now, so you may have eaten something that you thought was safe. The most common brands of mayonnaise and canned tuna now contain soybean oil, and most salad dressings contain it, too. Heck, I even found it in a jar of chopped garlic! You can get tuna without soy at Trader Joe's and Whole Foods, and Smart Balance mayo is low in soy and there's a canola-based mayo sold at many grocery stores that doesn't contain any soy.

Hope this helps!

[1974girl]

Also, when my daughter went for her celiac biopsy, they found eosinophils in her esphagus, too. Apparently that is not uncommon. There are others here that have found that too! Just curious, what did they tell you to do about that? I have gotten conflicting info from my child's doctor. But back to you...have you had the gene testing? That would be very informative!

[Lfrost]

The rash on the hands could also be dyshidrotic eczema. Here is a link to some pictures. An interesting note is that the sun seems to make it worse.

Open Original Shared Link

Open Original Shared Link

[Skylark]

The rash on the hands could also be dyshidrotic eczema. Here is a link to some pictures. An interesting note is that the sun seems to make it worse.

Open Original Shared Link

Open Original Shared Link

OMG! That's my old rash! I thought maybe it was DH because it itched like crazy but I never had the symmetry and DH is uncommon on hands. The interesting thing is I stopped getting it a year or two after I went gluten-free. I haven't had a breakout in ages. I wonder if there is a link between celiac and dyshidrotic eczema?

[KathrynB]

Hey! That's my rash! Thank you a million times over. I think I need to continue to explore other causes. I will get the genetic testing though- any recommendations for a do-it-yourself one? I am also having my 6 year old blood-tested for celiacs (underweight 30th %, chronic constipation, grey pallor, dark circles, low energy/appetite, tooth erosion) If he has it, then I probably do have it... hows that for working backward?!? It is hard to continue to subject myself to testing now that the pain is gone... I may stop and just wait to see if a new symptom appears, that could be another piece of the puzzle. 1974 girl- they said to retest in a few months to see if it had gone down, and that it may have been due to an allergic reaction. I imagine that a person with Celiac's or gluten intolerance might have high eosinophils because the body treats gluten as a harmful agent, much like an allergy causing the immune system to kick in. Good luck with your daughter!

[Lfrost]

Kathryn, have you had allergy testing done? One of the triggers for dyshidrotic eczema can be an allergic reaction to food. Also, even if you test negative for celiac you could be allergic to wheat (my son is) and the management would be the same--gluten free. You could also have intolerances. Basically, if testing food allergies, an IgE reaction would be a 'true' allergy and an IgG reaction would show intolerance to certain foods.

I hope you feel better soon. As for the eczema, I am currently dealing with an outbreak (in the blistering stage). I read somewhere that if you can 'pop' the blisters before they erupt (with a needle) and then use hydrogen peroxide or other disinfecting type thing to dry out the blisters it can help. I tried it last night and it really relieved the itching/pain.