Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Question From The Daughter Of A Celiac


bellaluna

Recommended Posts

bellaluna Newbie

I have a strong family history on my dad's side, and although I don't have many of the classic symptoms (bloating, gas, pain etc.) I do have a a few that have motivated me to try going gluten free for awhile- in addition to the family history. I have a persistant, bumpy, itchy rash that comes and goes on my legs, buttocks, back and shoulders. My MD says it's dry skin. It's not. Although I DO have exremely dry skin that's not relieved by any amount of lotion, water intake or omega 3 supplementation. The strangest thing though, is the condition of the skin on my fingers and hands. They're "pruney" looking, as if I've been soaking them in water. Especially my fingertip pads. They're covered in crosshatch marks. In fact, this is so pronounced that when I try to produce a fingerprint, the fingerprint is barely visible due to the presence of these lines. I can't wash dishes without wearing gloves because my fingertips become split and painful so easily. Has anyone ever heard of this as a symptom?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

Yes, the lines on the finger tips was the subject of quite a discussion a few months ago I think. I'm sure a search would turn it up.

However, the important thing is if you feel better on a gluten-free diet. If so, then you have an answer. But, if you maintain a gluten-free diet for more than a week or two, it will reduce the accuracy of any tests you might want to have done. So, if you intend to seek an "official" diagnosis, it is often advised to get the tests done before going gluten-free. Symptoms from ingesting gluten are often quite a bit more pronounced if you have been gluten-free for awhile, and new symptoms may show up too.

Also, it is often helpful to avoid dairy, especially as the body heals. You may be able to add it back later, though not everyone can.

The skin problems are very similar to what many on this board have described.

bellaluna Newbie

Thanks for your response. I will do a search of the forum on this topic.

It seems like obtaining an "official" diagnosis can be challenging, as many people who are symptomatic and respond positively to going gluten-free will often have negative test results. Even the supposedly definitive biopsy is subject to error. That's why I've decided to just try going gluten-free. I am also dairy-free. Vegan, in fact. My diet's pretty clean right now.

It's my understanding that gluten intolerance can produce outward symptoms, but the more insidious internal inflammatory damage may or may not be accompanied by visible symptoms, at least for awhile. What's the general opinion on this?

RiceGuy Collaborator

Well, my impression of how most doctors (who know anything about Celiac at all) view it, is that they seem to expect every Celiac to experience diarrhea and weight loss. But from the many posts about doctors, it seems clear that most are still fairly clueless.

I believe, that the symptoms are so wide-ranging, that the total absence of outward symptoms may never really be true. For instance, I had all sorts of seemingly unrelated symptoms, and not a single doctor ever even got close to a correct diagnosis. The actual causes of so many conditions are simply not known. At least not to most doctors. Plus, as time goes by, and we grow up with those various issues, they can seem like what's "normal". Looking back, I had a bunch of symptoms, but many were not debilitating enough to demand attention. Others I actually thought were common, like part of being human. It's amazing what we can become accustomed to.

But, it would seem logical that symptoms resulting from malabsorption wouldn't manifest immediately. The nutrient deficiencies will need to persist long enough to deplete reserves, and cause enough of a problem to be noticed. At which point, it is up to the person to take notice, take it seriously, and get to the bottom of it. It may seem like a minor thing, and more of a slight irritant or inconvenience, but can actually be the tip of a huge mountain of trouble.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,663
    • Most Online (within 30 mins)
      7,748

    Funnybone
    Newest Member
    Funnybone
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.