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This Is Unusually Frustrating- (Gross Picture)

Elfbaby

By Elfbaby
in Coping with Celiac Disease

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Elfbaby Apprentice
Elfbaby
Posted

On the one hand, my hands have healed and my tummy feels about 200% better. On the other hand, I feel like this diet is a mistake because I feel like I am becoming crazy sensitive to tiny amounts... it feels like I am moving in the wrong direction. I ate perfectly all day, and yet, I must have gotten gluten from somewhere because this evening I am having a full scale intestinal revolt and I have tiny blisters on my hands again! The amount of gluten must have been absolutely miniscule. I feel like 2 weeks ago, that much wouldnt have caused this big of a reaction. It kind of feels like I am making myself worse, And yet... I dont want to go back to the scabby bleeding hands and the daily...well... you know. Does the sensitivity get better once you are fully detoxed?

I literally cannot believe the difference in my hands. I would love to post before and after pictures, but, #1, I cant figure out how, and #2, I think it would likely gross people out anyway.

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Juliebove Rising Star
Juliebove
Posted

Everyone is different but it's likely you'll stay highly reactive. My daughter has an allergy and not celiac, but... Before she was just mildly sick all the time. I guess because she was eating wheat in some form at least several times a week if not daily.

A few weeks after she was diagnosed and before I knew any better, I went to a drive in and ordered a plain hamburger patty for her. Got it home and realized they had put it on a bun. So I took the bun off, washed off the patty with water and reheated it. Soon after eating it she was doubled over in pain. So... Not good.

ravenwoodglass Mentor
ravenwoodglass
Posted

It sounds like you also have DH so do make sure you are not consuming iodine in your supplements or iodized salt on your foods. Becoming more sensitive is normal and it is your body trying to protect you. Make sure you have changed out all the stuff you need to change out in your kitchen, check all your toiletries for gluten ingredients and go with as much whole unprocessed food as you can. If your home is not gluten free don't do baking with gluten flour for others as it will remain airborne for quite a while and gluten you. Things will get easier but many of us have ups and downs at first. Hang in there.

eatmeat4good Enthusiast
eatmeat4good
Posted

The expert in Celiac disease Dr. Peter Green says DH patients have to be very patient because any tiny trace exposure to wheat can result in weeks of blisters and rash. The reaction can take up to 2 weeks to fully develop. I have been trying to heal DH sores for 7 months. I still have a few. I got glutened by a vitamin about a week ago..a little longer. I thought my sores were not going to react, but the last two days they have been stinging, itching and they are inflamed. In my experience any tiny mistake with gluten is going to result in sores for a few weeks. DH Celiacs are extremely sensitive to cross contamination or trace exposure.

It is a lifelong commitment to being gluten free. And you can't go back to eating gluten, because your rash will drive you nuts. It can take up to 2 years to heal DH sores even if you are gluten free. I was happy for you when I read taht your hand rash had cleared up immediately because that is amazingly fast. I'm afraid you will always have to be super careful about avoiding gluten. The iodine will keep the antibodies active also just as Ravenwood said. The one time I have been able to be free of sores, I had to avoid both gluten and iodine for 3 months. Just as they healed, I added iodine and shortly afterward I glutened myself. Now I am dealing with 6 sores that are reacting daily and I'm very Strict with gluten avoidance by only eating meat, vegetables and a little fruit, and sometimes a snickers.

Eating shellfish can result in a big reaction due to the iodine content. I'm back to avoiding iodine now too because it is definitely effecting my sores.

DH is very difficult. I hope that isn't what you have, but I wanted you to know just in case you do have it.

sandsurfgirl Collaborator
sandsurfgirl
Posted

The sensitivity to glutening gets worse I hate to tell you, but going back to being a gluten eater is not an option. This is not an allergy. It's an autoimmune disease where your body literally destroys itself EVERY time you eat gluten whether you react or not. You may as well down some rat poison as eat gluten because gluten is poison to your body.

I'm not sure if you're saying you have only been gluten free for 2 weeks. It took me SIX months to have ONE symptom free day. If you are only 2 weeks in I guarantee you are not 100% gluten free. We all make mistakes in the first few weeks. We think something is gluten free and it isn't or we CC ourselves.

The alternative is getting sicker and sicker all the time and risking cancer, blowing our your colon and having a bag on your side for defecation, being wheelchair bound, having permanent brain damage, having a metabolism that is so destroyed you gain weight on 1200 calories per day. Every single one of those things have happened to someone on this board because their doctors did not diagnose them in time.

Once you are on the autoimmune spectrum, if you keep eating gluten you will get other autoimmune disease. I just met a doctor who has a lot of knowledge about celiac and he said he tests all his celiac patients for lupus because autoimmune diseases tend to multiply.

So stay on the diet and don't gluten yourself. The good news is that over time you will heal faster from glutenings. But I have been gluten free for a year and a half and I'm so sensitive I get sick from a few crumbs.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

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    • captaincrab55
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      By captaincrab55 · Posted

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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