Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Having Almost Every Symptom But Doctor Says My Suspicions Are Unlikely..


questiongirl

Recommended Posts

questiongirl Newbie

Hello! I've been having these following issues for months now, but my doctor believes that I could not possibly have celiac disease.

Obvious symptoms:

- Diahrrea and constipation

- Smelly stool

- Bloating (and lots of it!)

- blood on toliet paper from rectum (scary, i know its not celiac related..)

- General discomfort

- Some days having complete loss of hunger/apetite

The less obvious symptoms i have that I only found out were related to celiac after research:

- VERY sensitive teeth (i heard its only in the young, and im under 18 btw dont know if that means young)

- Legs falling asleep ALL THE TIME

- Fatigue

- Possible DH - Looking at pictures on the internet, my rash is no where near as severe. I have the small, red dots all over my body. Larger patches are on buttocks, and groin region, especially between legs (quite unpleasant) but for the ones around my body, they are very spaced out, and not close together like i see in the pictures. For example, theres two close on my neck, then some on the back of the neck, then about three dots on my chest... not really 'rashy', and they are itchy but not as severe as i've heard them being described

One thing though is, I haven't lost much weight. I'm about the same as I've always been, but I just look bigger with my insane bloating :(

Also, some days i feel alright. Like now and then i'll have a full meal, and ill be ok. The only really, really relevant symptoms which are always constant is the bloating, and constipation/diahrea

Ok so even with these things, my doctor ruled out celiac and had me do the barium test to search for an ulcer, which i did not have. Does it sound like celiac to you guys?


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



Celiac.com Sponsor (A8-M):



bartfull Rising Star

Yep. You either need to find another doctor, try going gluten-free for a while, or both. I don't know WHY so many doctors have their heads in dark places, but your experience is pretty common. Look around the forum and read read read. You will see that you're not alone, get great advice, and lots of understanding.

11475 Apprentice

Ditto to what Bartfull said.

Also - many of us gained weight when our symptoms came to a head, so not being underweight/thin is not useful in terms of a doctor trying to rule out celiac.

From your post, it sounds like he's just running with the theory of you having an ulcer...well, what about your rash? Is he ignoring that too? Why is he so sure it's NOT celiac??

Yay for you for finding this forum - please consider either taking more information to your doctor and asking for him to do the blood tests for you (remembering that there can be false negatives), or perhaps finding a more knowledgeable doctor. Good luck. Sorry you're having such scary symptoms.

MitziG Enthusiast

Most doctors are pretty ignorant about celiac. Unless you are an emaciated 6 yr old boy, they pretty much insist you can't have it.

But...you are the boss. Go back and INSIST on a full celiac panel (print the full list from this website- few drs will do the correct tests if you don't)

Do NOT stop eating gluten until all tests are done. Once the tests are done, regardless if it is positive, go gluten-free for a few months. Gluten intolerance is very common and won't show up on a test. You will likely find relief soon!

KMMO320 Contributor

Everything in your post sounds exactly like me. I am overweight but look bigger because of bloating. I ignored most of my symptoms for years because I assumed they had nothing to do with each other. I have sensitive teeth as well.

Up until recently (Im 35 now) I have only ever had one cavity in my life and it was a small one. Now, I have several all of a sudden.

I get canker sores frequently.

I would get another dr. I switched my dr 3 times until I found one who listened to me when I told her how I felt. The other 2 just wrote me prescriptions. I dont want to be on meds..I just want to know WHY I feel like this.

pinktulip103 Newbie

You will learn (as you read more and more on this forum) that celiac disease can manifest itself in many different ways. Some people have what doctors consider the "typical symptoms", some people have very weird, seemingly unrelated symptoms, while some people have no symptoms at all. I didn't think I had many symptoms as I was slightly overweight and felt okay most of the time, but after a week of being 100% gluten-free eating only whole, unprocessed foods, the daily migraines I had been suffering daily for 2+ years were gone and I had that "OH, this is what it should be like" moment when I used the restroom (sorry, TMI). Since going gluten-free a year ago after positive blood work and biopsy, I have lost 15 pounds and feel great most of the time. Unfortunately, when I do somehow get cross-contaminated, I get more sick than I ever did before I went gluten-free.

I would get tested, and if the test comes back negative, go gluten-free anyway. Do it 100% though. And by that, I mean only unprocessed foods. Many of us (myself included) can get glutened by food labeled "gluten-free" so I would stick to produce, eggs, and meat for awhile to see if symptoms improve. Also, avoid dairy for awhile too (I didn't have this problem, but apparently many celiacs can't digest dairy until completely healed).

It's really stressful figuring out what the problem is, but it will be worth it once you start feeling better. It could take months/years to heal, but hopefully you will be like me and notice improvements in just a few days.

Good luck!

-Caroline

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,248
    • Most Online (within 30 mins)
      7,748

    Stephen of the West
    Newest Member
    Stephen of the West
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Zuma888
    • knitty kitty
      You have one gene for Celiac.  You have a second autoimmune disease, Hashimoto's thyroiditis, which is frequently found at a higher rate with Celiac.  HLA genes carry autoimmune disease genes like Celiac and Hashimoto's and diabetes and others.   You have Celiac symptoms of reacting after gluten.  You said "I am however still suffering from the effects of the gluten challenge (food sensitivities, slight brain fog, weird stool, fatigue, swollen thyroid, bodyaches)."  And your anti-thyroid antibodies increase after gluten exposure.  While tTg IgA does not directly attack the thyroid, gluten exposure does trigger the  immune system to produce antibodies against the thyroid in genetically predisposed individuals.  You did not eat sufficient gluten (10 grams of gluten per day for two weeks minimum) to raise the autoimmune antibodies to the point they can be measured in the blood, so your blood tests may well be inaccurate.  You could choose to continue the gluten challenge of 10 grams a day for at least two weeks and get retested.   At the very least, you know that gluten is harmful to your thyroid, and because you are genetically predisposed to Celiac disease, a strict gluten free diet would be beneficial for your overall health.  
    • Zuma888
      Thanks @Scott Adams! I guess my question now is: do the celiacs who can get away with regular contamination without villi damage as you mentioned have to be strict about cross-contamination ? 
    • Zuma888
      Thank you very much @knitty kitty! I'm glad you brought up the point about histamine. I have been taking an antihistamine after meals where I don't feel so good and never knew why it helped so much. At first I thought I might have a food allergy, but I recently did a food allergy test and I actually have ZERO food allergies. Regarding your last point about the stages of grief, are you saying it's likely that I have celiac? I have Hashimoto's BTW and I know for sure that gluten causes an autoimmune response to my thyroid as my anti-TPO and anti-Tg go up and my throat feels swollen. Could the symptoms be due to that autoimmune response?
    • knitty kitty
      @Zuma888, The antibodies produced in response to gluten are made in the intestines.  When the body is provoked sufficiently, the antibodies overflow out of the intestines and into the blood stream.  Once in the blood stream, the antibodies can be measured with tTg IgA tests.  Three grams of gluten per day for two weeks minimum is enough gluten to make you feel the symptoms of having been glutened, but the antibodies are not in sufficient quantity to be measured in the blood. Ten grams of gluten per day for a minimum of two weeks is required to get the anti gluten antibodies at a high enough level in the blood stream to be measured by tTg IgA tests. So, no, occasional cross contamination or (heaven forbid) intentional cheat days will not be sufficient for tTg IgA testing.  You will still be making antibodies which will still be causing inflammation and damage to the intestines and body.  Histamine is released as part of the immune response to gluten.  High histamine levels lead to food sensitivities, brain fog, and body aches.   The damage done to the gastrointestinal tract affects the absorption of essential vitamins and minerals.  Malabsorption of fats can cause changes in stools.  Insufficient absorption of vitamins and minerals can cause damage to other organs like the thyroid if it can't get enough Selenium, iodine, iron, zinc, and Thiamine.  Brain fog and fatigue can be caused by low Thiamine and other B Complex vitamins.  Vitamin D is needed to regulate the immune system.  One gene is all that's needed to develop Celiac disease.  I know a Celiac diagnosis is a change that can be difficult to get your head around.  Many people go through the five stages of grief.  One stage is "bargaining".  Sounds like you're stuck there.  Every little cheat counts to your detriment.  But sticking to a gluten free diet, makes every meal a success.   Read the comments below the article... Best wishes!  Keep us posted on your progress!
×
×
  • Create New...