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Biopsy In, Blood Tests Tomorrow
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After two months of adominal/stomach pain and increased lack of appetite, nausea, anxiety, panic attacks, I had a colonoscopy/upper endoscopy last week with biopsies. They came back showing inflammation of both upper and lower GI. I'm going in tomorrow for blood tests for Crohn's, IBD, colitis, celiac...   I am hoping for celiac at this point honestly!  It is far preferable to the other options.

 

I'm wondering if my symptoms sound like celiac to others "in the know." My abdominal pain came on quite suddenly after a bout of stomach flu but I'd had a couple of "twinges" in months prior, like it was just getting ready for something to set it off. Since then it's been pretty constant, sometimes better, sometimes worse. My doctor's first diagnosis was diveritculitis, and the cipro and flagyl made me feel oh, so much worse! My ovaries got an A+ at the GYN's office so I went to a gastro specialist. CT scans all clear - colonoscopy looked perfectly fine - it took the biopsies to find something definitively wrong.

 

I haven't had much diarrhea - more constipated than anything else - except this past week when I've found it particularly hard to eat, so I drink a lot of my calories. A few times, though, I have noticed my stool (sorry, but it's that kind of forum!) has smelled oddly, strongly sweet. Does this ring any bells with anyone?

 

I'm sure it's strange to have someone in this forum hoping for a diagnosis of celiac, but please tell me I could be one of you. I'll give up bread. I can drink wine and sorghum beers. Just say it ain't IBD...

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The problem with diagnosing Celiac based on symptoms is that every symptom has other potential causes and then there are those of us who have no symptoms at all.  That said, what you experienced is not outside the realm of Celiac.  It could be that your bout of stomach flu triggered the Celiac symptoms.  It is good that you're getting tested.  Then you'll know.  And I understand what you mean about hoping that it's Celiac.  As far as big bad diseases go... Celiac aint half bad.  I think the the worst part is having all sorts of ailments and not knowing what's causing them.  But it's a relatively simple fix - just stop eating all gluten.  No meds.  No surgery.  No kemo.  Just no gluten.  I consider myself very lucky to have caught my Celiac early and that (knock on wood) that is all that I have.

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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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