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Ugh Dr Is Frustrating!

tinab3girls

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tinab3girls Rookie
tinab3girls
Posted

Blah... so I just got a phone call from my doctor's assistant telling me my blood results (celiac and thyroid) came back normal. I don't know what exact tests were run, I should receive the actual test results in about a week in the mail. He said he didn't know what the doctor wanted to do from here but he could ask and get back to me. I am at my wits end. 2.5 yrs of my life has been spent being sick and exhausted for no reason. Now I'm on a beta blocker for a fast heartrate but no reason for the fast heartrate. I keep getting bandaids for major problems but no actual fix. It's getting to the point where depression is starting to set in and I have never been depressed a day in my life. I just wish someone would want to put some effort into helping me figure out what is going on...

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eatmeat4good Enthusiast
eatmeat4good
Posted

We do.

Many of us have been there. Unable to get a diagnosis and yet symptoms getting worse and compounding. Depression and anxiety can become very debilitating. You should consider going gluten free very strictly for a 3 month trial and then see how you feel. You may find your own answer. Many of us do not or did not test positively and yet had complete resolution of varied and debilitating symptoms. I was sick for 7 years...in bed most of the last 5 years. Depression, anxiety, weight gain, nausea, fatigue, sores that would not heal, clumsiness and bumping into walls, inability to think, pale skin, ,migraine headaches,heart palpitations,and sometimes diarrhea. All of that gave not one clue to 25 Dr.'s about what could be wrong with me. I was never tested for Celiac. But when I read about it here I knew that is what I had. Trust your instincts and remember that many people test negative but still have Celiac. Testing isn't perfect. The answer lies in how you do when you have eliminated all gluten.

I've been gluten free for one year. The only symptom left is lingering DH sores. They are notoriously slow to heal and if I have been glutened at all will flare again for weeks. Other than that I am perfectly normal for the first time in 8 years. It feels wonderful. Don't put too much weight on the diagnosis if you feel gluten is a problem for you. Doing the diet is a personal choice...and one that may solve your problems.

AVR1962 Collaborator
AVR1962
Posted

Tell me about it! I realize you just finished testing. Have you tried going off glutens yet? It might be worth trying, especially if you are at a stuck poiint and docs can't figure out what is going on. If I would have waited on docs I am afraid where I would be right now.

One of my first signs that something was definately wrong was my vision but all tests were good and no one could explain my double and blurred vision. I was given prescript prenatal vits to help the fatigue and told it was age. Even when I got so sick and ended up in ER, docs still did not know what was wrong. My calcium was high and becaue of my existing kidney stones they thought it had to be hypercalcemia and that I had a bad parathyroid gland, went thru another battery of tests. Gastro blew me off. Looking back now with the knowledge I didn't have then, right there is when they could ahve taken action and didn't and perhaps this could have been caught. As it turned out I pretty much gave up on docs giving me an answer and in a lost ditch attempt of my own went off gluten. Ugh!

Five months later I was diagnosed with celiac by a new doc who looked at all my tests and saw the improvements I was making on the gluten-free diet. That has since been debated by my old doc which threw me off emotionally to think yet again, was this really what I was dealing with. Crazy!

  • 2 weeks later...
tinab3girls Rookie
tinab3girls
Posted
  • Author

Ok so I got my blood results, he only ran two tests so I wanted to list them on here and see if you think its worth contacting my Gastro dr to run the full panel.

Anti Gliaden IGA 145

TTG AB IGA 3<

Are these good enough to rule out celiac?

thanks for your insight!

mushroom Proficient
mushroom
Posted

They certainly would not be enough for me. Firstly, he did not run a total serum IGA to see if you are a normal IGA producer, and therefore if ANY IgA testing is valid. The AGA IgA and tTG tests, even if ithey were validated, are only two of several celiac tests - the total panel consists of the following:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

Also, you need the reference ranges the lab uses in order to be able to read your results.

Nowadas, the newer DGP is considered to be the most celiac specific and sensitive of the tests. I would ask my doctor to run the Total Serum IgA and the DGP IgA (and IgG while he about it). My personal choice.

ravenwoodglass Mentor
ravenwoodglass
Posted

Ok so I got my blood results, he only ran two tests so I wanted to list them on here and see if you think its worth contacting my Gastro dr to run the full panel.

Anti Gliaden IGA 145

TTG AB IGA 3<

Are these good enough to rule out celiac?

thanks for your insight!

If that was your anti gliaden IGA that number is quite high and that test would be positive. Even though different labs use different ranges I have never seen one where 145 is in the 'normal' range. If that was your total IGA and not the antigliadin then that would likely be within normal ranges on that. Does the doctors assistant know the difference between a total IGA and the antigliadin IGA? It looks like your TTG was negative but we don't have to have all the tests be positive to be celiac.

If you can get your doctor to run the other tests that would be a good idea. If your doctor won't run any others and is just going to refer you to a GI doctor stay on gluten until after the GI does the endo and then go gluten free.

tinab3girls Rookie
tinab3girls
Posted
  • Author

It was the medical records gal who read me my results over the phone because they didn't come in the mail. She had a hard time reading them but her first comment was 'run without Gliaden' would that be Anti Gliaden?

thanks everyone for your imput!

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kareng Grand Master
kareng
Posted

It was the medical records gal who read me my results over the phone because they didn't come in the mail. She had a hard time reading them but her first comment was 'run without Gliaden' would that be Anti Gliaden?

thanks everyone for your imput!

Who knows! She could have been reading some sort of instructions for the labe. Get a copy of it. Read it for yourself.

Edited:

Just saw you are getting a copy. If you still feel bad, make an appointment with the doctor. This sounds like you might get a call back but likely they will forget about it.

just like honey Newbie
just like honey
Posted

I have a question about the IGA total Serum testing. Do you have to be eating gluten for this to be accurate? I tested negative for TTG AB, IGA, but am now wondering if I should go back and get my IGA total tested, but I have been on a gluten-free Diet for 3 months now.

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      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.
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    • 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

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      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.
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      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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