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Unknown Diagnosis

Miss5

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Miss5 Newbie
Miss5
Posted

Two years ago, my mother, myself and a couple of friends of ours drove up to San Antonio for a weekend during the summer. On our way up there, we stopped at and a buffet on the side of the road and we sat for lunch. The special that day was Catfish and so my mom added some to her plate and we all enjoyed our lunch. Within the next couple of hours she began breaking out in mild hives. As time progressed her hives became pretty severe. She went to the emergency room that night and they put her on prednisone.

Ever since that day that she was in the E.R she has been suffering from extreme fatigue, very bad pain in her joints, brain fog, and sudden weight gain for no apparent reason. The pain in her joints fluctuates depending on the day. From what she tells me, some mornings when she wakes up and gets out of bed, her pain is so severe that she has trouble getting around. She's been to several doctors already and they have all had trouble diagnosing her. We read an article about celiac disease and pretty much all of her symptoms matched up with the symptoms of celiac disease. A couple of weeks ago she prepared to start a gluten-free diet, but then she got her results back for her blood tests and and they showed up negative for celiac so she discontinued the diet. I'm writing because my poor mom is exhausted and frustrated. I wish there was something I could do for her but there isn't. I feel helpless. I don't know that she has celiac, or non-celiac gluten intolerance, but I thought maybe I would look into this condition a little further before ruling it out completely.

She went to see a gastroenterologist this morning actually, and from what I understand he was very rude and sarcastic with her. I'm so bothered by this because it's a doctor's job to help his patients; not laugh at them and make them feel stupid. He told her there wasn't much he could do without taking a look so he sent her for a colonoscopy as well as some other procedure that I forget.

I would just like to hear, maybe, someone else's experience with this issue and see if anyone has other suggestions. I just want her to feel herself again.

Thank You

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ang1e0251 Contributor
ang1e0251
Posted

I'm sorry the doctor was so rude to your Mom. That is just unacceptable in a healthcare professional.

Did he schedule her for an endoscopy? That is the correct test for celiac disease. They need to take multiple biopsies in different locations for the testing to be accurate. As for her blood test, Ask for a copy of the test results to be sent to her. Post those results here. Sometimes the reading can be borderline but they don't tell you that.

If they read her endoscopy as negative, also get a copy of the test results sent to her. You never know. If they really are all negative, she could still be gluten intolerant. There is no test for that condition except a gluten-free diet.

Get all the test results, then decide on a course of action. You can come back with the results and ask more questions. We're glad to help.

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      High DGP-A with normal IGA

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      @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

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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.
    • 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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