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I Glutened Myself On Purpose.

terr

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terr Newbie
terr
Posted

Hello to all. I stumbled onto this forum about three months ago when trying to figure out this insanely itchy rash that has lasted the better part of 2 years.. I was told that it was hives and that I should take h1s and h2s (zyrtec, and zantac) together and that it would go away in time. Towards the end of the worst 2 years of my 38 I started having horrific GI symptoms as well and googled the 2 symptoms together. Everything pointed towards gluten intolerance for me. I have lost a grandfather and a great-grandfather (opposite sides of family) to cancer of the esophagus, and lost my maternal grandfather to colon cancer which spread to bone. My sister has Turner's Syndrome which ups my family's chance of being gluten intolerant. We also have eczema, psoriasis, asthma, a laundry list of indoor/ outdoor allergies, and I have at least one relative with diabetes.

I was comfortable with this (self) diagnosis and went off gluten. I have been Gluten-Free for 11 weeks and started seeing massive improvement. No GI symptoms at all. They went away immediately. My rash still came on whenever I would exercise (sweat), after a hot or too warm shower, first thing in the morning, and after any instance of stress, an argument with a friend once gave me a rash, etc.. But, it was more manageable than before when I WAS eating gluten.

I had a slight trace of rash on my neck when I went to Thanksgiving dinner with friends and spent some time with my friend who is a physician's assistant. Let me start by saying that most of my friends give me quite a bit of crap over the fact that I am suddenly Gluten-Free and they scoff at my self-diagnosis. I don't have health insurance (or a steady job). No one wants to hire a leper apparently..

In any case, this friend of mine thinks I have eczema. The rash is in all the usual eczema places, inside elbows, neck, chest and the lower part of my face. It starts out feeling kinda wet- especially the folds in my neck, then a day or so after it starts to dry up and gets really dry. I can moisturize for a half hour before it starts to feel like skin again..

Fast forward to two days ago.. I had a little bit of a sweat-induced rash from riding my bike to a painting gig that I am doing, and I stopped to get some lunch at a middle eastern restaurant that I love. Lots of safe menu items and what do I order? A fracking felafel sandwich! And I did it on purpose. I wanted to see if ingesting gluten now after 11 weeks off would spark symptoms and guess what? I spent the last 2 days in bed. I have slept for 14 hours both today and yesterday. My rash is OUT OF CONTROL, and I think it's now showing up on the backs of my knees!

Does anyone here have a rash like this? It seems to have characteristics of DH, eczema, and urticaria. I scratch it at night until I bleed. It doesn't even wake me up. It comes on when I sweat, in the morning, after sex and showers.. even if I finish in cold water.

Despite this stupid, stupid experiment, I had made some serious progress. I am positive that I have a gluten problem. What I can't quite figure out is the rash. If I stay on this diet forever (I will), will the rash go away? Regardless of what kind of rash it turns out to be? Why do I sleep for so long when it gets bad?

I am going to cut out dairy completely from now on, along with gluten and prepare all my meals myself and see if that helps.. If anyone has had a rash like this, PLEASE share your story. This rash is actually ruining my life.

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pricklypear1971 Community Regular
pricklypear1971
Posted

Well, I don't know if I've had a rash "like" yours but I have a gluten-sensitive rash that is probably DH.

So, now you are pretty sure the rash responds to gluten...so stay away from gluten.

There are several gluten sensitive rashes - eczema, psoriasis, DH, and some I can't spell yet. Having one or the other (or more than one, ick) is miserable.

If you want to try low-iodone in conjunction with gluten-free, milk free you may see some relief if it's DH. You're more than halfway there, btw, going milk free. Google "thyca" for diet info.

Ice packs help me...as does low-iodone. And I use Vanicream lotion.

I just broke out in my first real rash since low-iodone and I am guessing I'm on the right track because I barely broke out and they are pinprick sized bumps instead of penny-sized. I'm working under the assumption the iga levels are falling and there's just not as much there to react with.

Di2011 Enthusiast
Di2011
Posted

Terr,

I'm starting to get that skin problems that may be gluten related seem to be the worst kind of issue for TEMPTATION. I have some advice, and I am still head to ankle DH: DONT DO THE TEMPTATION / TEST GLUTEN. You WILL NOT KNOW if gluten is the problem unless you eliminate it from your diet LONG TERM. I have been strictly (((and I mean strictly))) for four months and I am seeing the best results in the past 3-4 weeks.

I was tempted and made mistakes and IT DOESN'T WORK.

If you really want to know if it is the glutens causing your problems then you need to TEST Gluten-free for months.

Be brave.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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