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

Not Diagnosed But.......

Tasha2004

Recommended Posts

Tasha2004 Contributor
Tasha2004
Posted

Last February my Endo gave me the Celiac blood workup. My Mom has Celiac and my sister and I have diabetes, so there is a good chance of problems in this area as well.

Well, my IgA showed an irregularity (I think it was a 60 and normal was 30). Every other test was totally negative and in fact could not be even conducted. They sent me for a bone scan, which showed very little problem and they also checked for anemia etc. I didnt show any signs or symptoms of anything.

This year I have started to show a slight problem with anemia, though they are not concerned about it. Now the problem with my stomach is a rather constant problem of (what we call on another board "Burbbling.") Bubbles bursting, and some gas but no other problems at all. I know there is a possibility of thyroid problems causing stomach trouble, and I have been treated for Graves disease and am now hypo thyroid. I could easily also have diabetes related stomach damage.

I have no desire to have the old tube down the throat, but my physicians wouldnt mind ordering another blood test. Is this something that might show a change? I assume if everything was still negative, it might mean I had a different sort of problem?

again, I have no symptoms but this bubbling feeling, and it is bothersome but not something that makes you feel sick. I have tried to check what causes it, and am more led to believe it comes from Diet Soda, Onions, Cabbage, and for some reason Instant Oatmeal. I can not tie it in to eating breads of any kind. Last night I intentionally made a meal of stir fried veggies and rice, and today the problem has been just awful. I know there are hidden sources of Gluten though, but it just doesnt seem to be connected to that.

Any thoughts?

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

Celiac.com Sponsor (A8-M):


Dwight Senne Rookie
Dwight Senne
Posted

Hi Tasha,

I don't have a definite yes or no answer, the best I can say is maybe! The only definitive test for Celiac is the endoscopic biopsy (camera down the throat). Even that is not foolproof, as the skill and experience of both the gastroenterologist taking the biopsies and the pathologist examining the biopsy slides are crucial. However, it is much more determinative than the blood tests.

As for your reservations about the endoscopy, fear not! They will give you a mild sedative and you will not remember a thing. Mine was a breeze and I would consent to have another one in a heartbeat!

Unfortunately, there are no hard and fast symptoms of Celiac Disease. That is one of the things that makes this disease so difficult to diagnose. I recommend discussing the possibility of an endoscopy with your gastroenterologist, and if he/she thinks it's warranted (I think it is), get it done!

Tasha2004 Contributor
Tasha2004
Posted
  • Author

Thanks, I just went ahead and had the Endo put another blood test on the paperwork so I can see if there is any difference over one year. I figured that was a safe place to start!

Nin Newbie
Nin
Posted

From all that I have read I t hink you probably are pre-celiac, and you could do a stool test with "enterolab" which is more sensitive than the blood test.

The Italian Doctors who are way ahead have now come up with a test similar to the stool test, they think this is the way of the future because the blood test doesn't pick up everyone.

Good luck!

Tasha2004 Contributor
Tasha2004
Posted
  • Author

I know, I read the research on this and I think it would be very beneficial, but I dont have the money to invest in it!

Wonder if they ever do research studies? I would be perfect for it.

And I agree, I think one day I could have Celiac.

Mom didnt get really sick until she was 65, but by then she was pretty miserable.

Archived

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

Go to topic listing

  • 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. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Finding gluten free ingredients

      I shop a fair bit with Azure Standard. I bought Teff flour there and like it. they have a lot of items on your list but probably no soy flour, at least not by that name. https://www.azurestandard.com/shop/product/food/flour/teff/brown/teff-flour-brown-unifine-gluten-free/11211?package=FL294 As mentioned in another answer, Palouse is a high quality...
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Finding gluten free ingredients

      fwiw, I add nutritional yeast to some of my recipes. since going gluten free I eat almost no processed foods but I imagine you could sprinkle yeast on top.
    3. knitty kitty
      - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

      @Charlie1946, There are many vitamin deficiencies associated with PCOS and Celiac disease and mental health issues. The malabsorption of nutrients caused by Celiac can exacerbate PCOS and mental health issues. Vitamin B 3 Niacin (the kind that causes flushing) improves sebaceous hyperplasia and PCOS. (300 mg/day) Vitamin B 1 Thiamine improves...
    4. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem. Just a few other thoughts. I had debilitating anxiety prior to my diagnosis. I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice: for depression, The Depression...
    5. trents
      - trents replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,902
    • Most Online (within 30 mins)
      7,748
    WOLINM
    Newest Member
    WOLINM
    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

    • Aretaeus Cappadocia
      Finding gluten free ingredients

      By Aretaeus Cappadocia · Posted

      I shop a fair bit with Azure Standard. I bought Teff flour there and like it. they have a lot of items on your list but probably no soy flour, at least not by that name. https://www.azurestandard.com/shop/product/food/flour/teff/brown/teff-flour-brown-unifine-gluten-free/11211?package=FL294 As mentioned in another answer, Palouse is a high quality brand for dry beans, peas and other stuff. I buy some foods on your list from Rani. I've been happy with their products. https://ranibrand.com/ Azure and Rani often use terms that skirt around explicit "gluten free". I've contacted both of them and gained some comfort but it's always hard to be certain. FWIW, my IgA antibody levels are very low now, (after including their foods in my diet) so it appears I am being successful at avoiding gluten. 
    • Aretaeus Cappadocia
      Finding gluten free ingredients

      By Aretaeus Cappadocia · Posted

      fwiw, I add nutritional yeast to some of my recipes. since going gluten free I eat almost no processed foods but I imagine you could sprinkle yeast on top.
    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      @Charlie1946, There are many vitamin deficiencies associated with PCOS and Celiac disease and mental health issues.  The malabsorption of nutrients caused by Celiac can exacerbate PCOS and mental health issues. Vitamin B 3 Niacin (the kind that causes flushing) improves sebaceous hyperplasia and PCOS. (300 mg/day) Vitamin B 1 Thiamine improves dysphagia, and with Omega Threes, Sjogren's, and PCOS.     (300 mg/day) The other B vitamins are needed as well because they all work together like an orchestra.   The fat soluble vitamins A, D, E, and K, are needed as well.  Low Vitamin D is common in both PCOS and Celiac and depression.   Deficiencies in Niacin Thiamine, Cobalamine B12, Folate B 9, Vitamin C, and Vitamin D can cause mental health issues.   I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants.  My mental health issues didn't get better until my vitamin deficiencies were corrected and a gluten free keto/paleo diet adopted.   Though blood tests are not really accurate, you may want to get tested for deficiencies before supplementing, otherwise you'll be measuring the vitamins you've taken and blood tests will show blood levels that are too high. Yes, Thiamine TTFD and the other vitamins are available over-the-counter.  A B Complex with additional Thiamine TTFD and Niacin made a big difference to my health.  I follow a paleo diet, and make sure I get Omega Threes.  I took high dose Vitamin D to correct my deficiency there.   I've run through the mental health gamut if you would like to talk about your issues.  You can personal message us if you would be more comfortable.   Interesting Reading: Nutritional and herbal interventions for polycystic ovary syndrome (PCOS): a comprehensive review of dietary approaches, macronutrient impact, and herbal medicine in management https://pmc.ncbi.nlm.nih.gov/articles/PMC12049039/
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
      Severe severe mouth pain

      By trents · Posted

      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
×
×
  • 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.