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Will I Ever Have A Normal Immune System?

lizajane

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lizajane Rookie
lizajane
Posted

I was diagnosed in mid March after a few weeks of vomiting and a biopsy that revealed excessive lymphocytes. In the first week I went gluten free, I was exposed twice and threw up twice. I may have thrown up maybe once since then when I ate something questionable (gluten free, but in shared facility). I *think* I am truly gluten free because I no longer throw up. But once or twice I have felt a little off and thought maybe I wasn't as sensitive as I was when the throwing up started.

So it has been over a month... but I am still getting sick ALL THE TIME. My winter, much like last year's, looked something like this-

Nov: bad cold

Dec: bad cold

Jan: sinus infections

Feb: laryngitis and bronchitis

Feb: vomiting started

March: flu/pneumonia

Apri: bad cold, UTI

REALLY??? this is just NOT NORMAL. I have two little kids, but they AREN'T sick. I am! They haven't been sick nearly as much as me. I do not work outside the home, I wash my hands like crazy AND I have started taking vitamins, as recommended by my doc to increase my immunity.

How long will it take??? Is this sick-all-the-time cycle familiar to anyone else?

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mushroom Proficient
mushroom
Posted
I was diagnosed in mid March after a few weeks of vomiting and a biopsy that revealed excessive lymphocytes. In the first week I went gluten free, I was exposed twice and threw up twice. I may have thrown up maybe once since then when I ate something questionable (gluten free, but in shared facility). I *think* I am truly gluten free because I no longer throw up. But once or twice I have felt a little off and thought maybe I wasn't as sensitive as I was when the throwing up started.

So it has been over a month... but I am still getting sick ALL THE TIME. My winter, much like last year's, looked something like this-

Nov: bad cold

Dec: bad cold

Jan: sinus infections

Feb: laryngitis and bronchitis

Feb: vomiting started

March: flu/pneumonia

Apri: bad cold, UTI

REALLY??? this is just NOT NORMAL. I have two little kids, but they AREN'T sick. I am! They haven't been sick nearly as much as me. I do not work outside the home, I wash my hands like crazy AND I have started taking vitamins, as recommended by my doc to increase my immunity.

How long will it take??? Is this sick-all-the-time cycle familiar to anyone else?

It will probably sound familiar to quite a few, maybe not quite that bad, but...

I had to quit my bridge club because people would come in all the time with the sniffles, I would end up with a major cold followed by chest infection and antibiotics. It got to be real old. Dh was the same, only his specialty was sinus infections. In middle of summer we both did the ferry crossing between the two islands here (3 hours). Both ended up with a three-week flu starting at exactly the same time. Probably a tourist from Asia brought in the latest Asian variety. And so '07 went...

Went gluten-free mid-Nov. '07. Played bridge at the club in Dec. (for the last time!). Two days later, flu which lasted until after Christmas and through New Year's Day. Had one good week then started coughing again and coughed for three more weeks with acute bronchitis (refused prednisone and antibiotics which they tried to foist on me--I thought I had pneumonia), and said I was used to coughing now so I would just keep doing it. All this time, constant UTI. Many courses of antibiotics, never clear. Finally read a column by a naturopath in the Sunday paper about cranberry tablets. They kept it at bay unless I forgot to take them (which I did last July). However, that is the last time. No more UTI's, don't even take the cranberry tablets any more, no infections, flu(s) or bronchitis. So it took 8 months for my immune system to kick in. There is hope for you yet, LizaJane. Hang in there.

ang1e0251 Contributor
ang1e0251
Posted

My immune system is much stronger since going gluten-free. Although I have to vote you the Sickest of Them All!! I have increased my vitamin regimin as needed. I added the sublingual B12 and that gives me a boost and sense of well-being, I have to think my immune system loves it. Beefed up the magnesium and reduced calcium.

By the way for UTI's, my sister swears by Vit. C. She keeps hers away with it. My Mom was getting severe ones and hers stay away now as long as she takes her C. They are not a problem for me. I suffer more with yeast infections. I seldom have one now where before I had them at least monthly.

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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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    • 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
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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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