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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Son's legs shaking

    2. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    3. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    4. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    5. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,853
    • Most Online (within 30 mins)
      7,748

    Maud
    Newest Member
    Maud
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
×
×
  • 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.