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Saw The Doctor Yesterday & Thank You For Your Support!

TracyB

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TracyB Apprentice
TracyB
Posted

Hi everyone,

Doctor appt. went well - it went better than I expected. I think she is skeptical that I have celiac but was not at all unwilling to have me checked for it. The test she has requisitioned is: Immunoglobulins Quantitative (IgG, IgA, IgM). She has also requested TSH for thyroid, ALT (liver), Creatinine, Ferritin, Iron and TIBC along with a regular CBC and also a urea breath test - also an endomysial Ab which I haven't looked up yet and don't know what that is....

I asked her if she thought it was normal for a 3 year old to be diagnosed with IBS. She said that it is NOT what anybody would diagnose now and she feels I was misdiagnosed as a child. She said that in toddlers they can have a bowel problem where the bowel folds over itself and causes extreme pain that goes away and comes back, however that wouldn't explain the same pain lasting a lifetime, because it is a toddler thing.

Anyway, even if it ends up being IBS only than at least I'll know. I need to know for my son and my girls.

The appt. was good in another way as my son, who is an incredible sweetie, is having some serious issues and as my doctor thinks he is the nicest boy she knows ( :) ) she asked about him the second she walked in the door for my appt.! Both of our sons have ADD and were diagnosed close together. She's such a good doctor (and I really had no reason to doubt she'd help me re: celiac) - she is pulling out all the stops to help my son - and is getting him in urgently to a specialist. I have no doubt that she'll go to bat for me if need be...

Thank you all for your support - this really is a wonderful site for many,

TracyB

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aikiducky Apprentice
aikiducky
Posted

Just a heads up that the only one of those tests that tests specifically for celiac is the endomysial antibody, and that one can be used to rule celiac in but not to rule it out. It can give a false negative if your intestine isn't damaged enough. So if it comes back negative, you might need to talk with your doctor about further testing.

Pauliina

TracyB Apprentice
TracyB
Posted
  • Author
Just a heads up that the only one of those tests that tests specifically for celiac is the endomysial antibody, and that one can be used to rule celiac in but not to rule it out. It can give a false negative if your intestine isn't damaged enough. So if it comes back negative, you might need to talk with your doctor about further testing.

Pauliina

I specifically asked her and she said she would give me every test?? Which tests should they be then?

TracyB

ShayFL Enthusiast
ShayFL
Posted

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG)

Total Serum IgA

TracyB Apprentice
TracyB
Posted
  • Author
Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG)

Total Serum IgA

Dang it! So the EMA and TTG and the Total was missed then - but it's not even on the lab requisition. Maybe I should call the lab services and ask if they even test for those here.

Chantalle

nora-n Rookie
nora-n
Posted

The EMA and total IgA were on you list, (EMA = endomysial ab) the missing tests were the ttg and antigliadin (best to have both teh IgA and IgG versions of them both run)

The EMA usually is only positive in advanced celiac disease, an the ttg should also be only positive if there is severe villi damage. The antiglidadin test may be positive in early celiac, and the IgG version should be even more sensitive to pick up early celiac. All this in theory. Some people will only have one of these tests positive. A good portion will just have negative tests despite of celiac disease.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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