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Disapointed...

Bigbread

By Bigbread
in Coping with Celiac Disease

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Bigbread Rookie
Bigbread
Posted

Damn, I

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mushroom Proficient
mushroom
Posted

I am sorry you didn't get the definitive answer you wanted :( So many of us don't. But hey, if the gluten free diet makes you recover, then isn't that an answer in itself?? :) And whoever told you you could eat rye ought to be shot because the gluten in rye is the same as the gluten in wheat, as is the gluten in barley. Some celiacs tolerate certified gluten free oats; some do not.

If you have itching and burning and red patches that scar when they heal, that really does sound suspiciously like dermatitis herpetiformis, which is the skin form of celiac disease. People with DH will often test negative on the blood tests. The way to test for dermatitis herpetiformis is to find a dermatologist who is familiar with it, and who will take a biopsy adjacent to (not ON) the lesion, because the antibodies will be found in the adjacent tissue. A diagnosis of DH is a diagnosis of celiac. What have your doctors said about these red patches that scar? Do they have little blisters in them? Has anyone given you a diagnosis of what they are? Maybe that should be explored - it could give you your definitive answer.

Dixiebell Contributor
Dixiebell
Posted

Hi Bigbread. Have you been to a derm. for a biopsy of that rash? Sounds like you could possibly have DH. If you have DH then you have celiac. If you can get a biopsy, they need to do it beside the break out not the break out itself.

Bigbread Rookie
Bigbread
Posted
  • Author

Thanks for the posts.

My skin has been diagnosed with acne. It doesn't matter what my skin looks like Dermatologists(are the worst- been to 6) say all forms of skin problems are acne and food does not cause skin problems. Expect Exzema should not drink milk. They even refuse tests and wont' listen to other symptoms. Even when I got a bad reaction to homeopathic meds that caused my skin to scar I was told its acne. I honestly dont think they know what to do if the 3 acne meds dont work. Which I can tell you it doesn't on me.

The worst part is honelty the part where they dismiss me as if I'm a todler then I know they have no idea what they are looking at. I've been to 25 docters in total. So I am really tired. If this doesnt work I don't know what will.

mushroom Proficient
mushroom
Posted

I know what you mean about dermatologists, they suck - I won't go back to mine; I hate that woman! She told me not to stop a medication I was taking for my RA even though it was making my psoriasis so much worse. Ha, what did she care? It was no skin off her nose, only mine :blink::lol:

Seriously, though, will no one take you seriously? Do you have someone who could go to the appointment with you and be an advocate for you, and not allow the doctor to be so dismissive? It is so ridiculous so say that food does not cause skin problems; almost all my skin problems (except the cancers :o ) have been caused by food. What a bunch of bunk. I think doctors become dermatologists because they aren't bright enough to be anything else :rolleyes: Okay, end of dermatologist rant.

Skylark Collaborator
Skylark
Posted

If you go off gluten and all your problems go away, that will have to be a "diagnosis". Actually what you describe could be more allergic than celiac and the definitive test for allergies is elimination and challenge. Try the diet and see what happens. good luck!

cassP Contributor
cassP
Posted

i had Excema on my foot for 5 years- it itched so bad i would scratch till it bled.. it was horrific. it went away when i took wheat out of my diet a decade ago... not milk.

your diet can most definitely affect your skin. i hope you find the answers you want and feel better :)

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tarni Rookie
tarni
Posted

Hi Bigbread, yes Damn indeed! I

Monklady123 Collaborator
Monklady123
Posted

Yep, just go gluten-free and if you feel better then that's your "diagnosis". I've opted not to have the endoscopy because I don't want to go through several months of eating gluten every day. For me it's simple -- if I eat gluten I feel awful, if I don't then I feel good.

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    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
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      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
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