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Feeling Worse After Feeling Better
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4 posts in this topic

Hi Everyone,

I've been reading the forum a lot since this summer when I got the suspicion that I have celiac. It's always helped a lot to read about stories similar to mine. Thank you for that!

My story:

I've had an eczema type of rash on my hands for 4 years and that is what made me look for answers for the last few years. The rash actually started at the same time as an occasionnal bloating and some pain on the left side of my belly button. Doctors didn't say anything helpful and the mild symptoms didn't bother me much for the first two years. Then my rash got worse and I got into a long depression which I thought was due to me moving abroad and being lonely. In the last year or so additional symtoms arised, like UTIs and tonsil inflammation which both would go away and come back often. I've had trouble getting up in the mornings for 6 years now and I used to sleep 9-10 hours and wake up as a zombie.

So in the summer I read about celiacs and realized that it might be the answer for all my symptoms. I went through testing. Everything came back negative but I was already gluten free when tests were done and my health was improving. I definitely have a reaction to gluten. My UTI comes back every time I accidentaly eat it and I have GI symptoms, too that I didn't use to have before going gluten free or at least I didn't notice them...

I've been gluten free for 4 months and at the beginning everything seemed fine. Eventually. I got rid of lactose, too because it seemed to be bothering me. Exactly a month ago I bought some muffins that were on the gluten free shelf in the supermarket. After eating all 6 of them I realized they were made of wheat flour. I got my UTI symptoms the next they (with blood in my pee) and they lasted for about two weeks. My problem is that since the glutening I don't seem to get back to my improved state. Even though the UTI is gone, I am having GI symtops, mostly bloating and pain on the left side of my stomach and I'm sleeping a lot again and don't have much energy. Before the glutening I've been eating lactose again and now I'm trying to get rid of it at least for a while and I'm also not sure whether grains are good for me.

Anyways, I would appreciate any ideas on my situation or even just supporting words because the last month have been really difficult waiting for all the glutening symptoms to go away. Do you think it's possible that the glutening brought back my lactose intolerance? Does it happen to any of you, too?

Thanks so much for taking the time to answer!

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Just giving you a big hug and wishing you well.It does take a while to bounce back, especially after such a large amount. Even much smaller amount made me sick for a few days at a time, so what you are experiencing is very reasonable.

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A big hug along with a couple thoughts:

Some of us become more sensitive to minor amounts of gluten as time gluten-free increases - is it possible you could be getting minute amounts of gluten from cc at home or while dining out - thus keeping the symptoms of the muffin mishap going?

If you improved by removing lactose when first gluten-free, I'd remove it again now - give the gluten-free/lactose free time before removing more items.

There are many up and downs while your digestive system recovers - you are not alone - it is possible that you have become intolerant of something else about the same time as your accidental glutening - should your resurgence of symptoms remain after another month or so it may be time to look at other intolerances.

If you haven't kept a food/symptom log - it would be a very good idea to start one - it is the first step in tracking other possible problems - some other food problem may become obvious as you track your symptoms.

Hang in there - the good news is you improved once - time will get you there again :)

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Thanks so much to both of you for the replies!! It felt really good to read them!

I don't eat out but am living with roommates who do eat gluten and although I'm very careful not to get cc'd, there is a chance it's been happening... I'm now 4 days lactose free and I'm seeing some improvement. I'm also thinking about taking probiotics and something that could help with the inflammation issues. I also keep a food log. So I guess it's all about patience now.. :)

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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