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Feeling Overwhelmed
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I recently had a positive blood test result and I am awaiting my biopsy results. I have spent the last month cursing my GI doctor for making me wait a month for an endoscopy. He wanted me to have a colonoscopy first then the endoscopy. Part of the problem was that I have never eaten a lot of gluten, maybe three pieces of bread a week or less, so my first blood test came back a weak positive 25 on the Gliadian AB IGA test. Then I had the colonoscopy and another blood test, this time the Gliadian AB IGA test came back a strong positive +41 but the other three tests came back negative. I ate one piece of bread a day. Anyhow, my symptoms have gotten worse everyday, at first it was bloating and a lot of gas, and then constipation interrupted by diarrhea, then diarrhea all day and at night. I have had lower body aches, congestion, dizziness, and lots of hunger, slight vomiting, stomach ach, and fatigue. These symptoms seemed worse when I had lamb or other red meats. Originally I went to my doctor because I was having constipation and sudden diarrhea attacks (running to the bathroom events).

It seems to me that I have a gluten intolerance and maybe celiac disease. In any case I pretty much have decided that I am giving up gluten. I have few questions, first I am worried that maybe I may have some other problem and second, I went today to Whole Foods and although I found gluten free foods, I had hard time finding things I liked. I am also lactose intolerant (self diagnosed) and after reading some of the posts I am wondering if I should get a milk allergy test. Another question I have is that I noticed that labeling is not consistent. Since my biopsy I have stopped eating gluten I feel slightly better. Feeling overwhelmed.

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Sounds like gluten is an issue for you.

I had the same problem as you at first. There was a lot of crappy tasting gluten free stuff and I was like o great I am going to have to eat this my whole life.

After a while, you will learn there are alot of good gluten free brands that are good it is just a matter of finding them. This site will definitely help you out on things to try.

Here are a few great tasting gluten free foods:

-Tinkyada pasta is loved by an overwhelming majority of people. It tastes normal

-Wellshire Farms Chicken Bites-fully breaded and taste like normal ones if you ask me

-Foods By George cinnamon english muffins

-Cybros rice rolls

-Kinnikinnick donuts/breads

Believe it or not we can also have alot of mainstream brands of food still. There is a list of brands that will list wheat,rye,barley,oats on the label or they will be safe-they do not hide anything even under otherwise questionable ingredients. This saves us a lot of time since alot of ingredients can hide gluten.

Also, the list of safe and forbidden ingredients and foods would help you. Here is the link if you do not have it. http://www.celiac.com/st_main.html?p_catid=12

Feel free to email me if you need any help... I am sure this site will give you tons of info. People on here are so supportive and knowledgable. It definitely gets easier as you go and it will become a normal way of life.

Also, a biopsy can rule celiac in but can not rule it out. The doctor could miss damage if it is sporadic or there may be no damage yet if its in beginning stages. So you may still have it even if the biopsy shows negative.

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Thank you for all your advice. I think I was having a little breakdown. I will use all your information.

:D

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It seems to me that I have a gluten intolerance and maybe celiac disease. In any case I pretty much have decided that I am giving up gluten. I have few questions, first I am worried that maybe I may have some other problem and second, I went today to Whole Foods and although I found gluten free foods, I had hard time finding things I liked. I am also lactose intolerant (self diagnosed) and after reading some of the posts I am wondering if I should get a milk allergy test. Another question I have is that I noticed that labeling is not consistent. Since my biopsy I have stopped eating gluten I feel slightly better. Feeling overwhelmed.

<{POST_SNAPBACK}>

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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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