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Ninja

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Ninja Contributor
Ninja
Posted

Hi, my name is Laura and I've been lurking for quite some time now. ;) I've learned so much from reading all of your posts and I am so grateful this place exists. I am 18 years old and I've always been a "sick" kid. I didn't begin to put the pieces together until recently (doctors have not been helpful thus far!). As a baby I had many feeding and gastrointestinal issues, but I continued to grow so the doctors weren't concerned. I had multiple multiple ear infections up until about age 10, but then began getting strep fairly frequently. (I had my tonsils removed when I was 14 which helped with the strep but I now get sinus infections instead.) Somewhere between age 11-13 we sought medical help because I was having severe food poisoning type reactions (terrible cramping and diarrhea) to random foods

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rosetapper23 Explorer
rosetapper23
Posted

False-negatives are extremely common with bloodtests for celiac. Count your blessings that you have found what is causing your numerous symptoms....and live a happy life from here on out. Many of us suffered from your same ailments well into our 40s and 50's. Welcome to the Forum!

eatmeat4good Enthusiast
eatmeat4good
Posted

Your story is very well-written and you have done extremely well in figuring out what is wrong with you. So so happy for you that you know at such a young age. Your life will be immeasurably better than those like me (48)who have only known about gluten damage for a year or so. The diagnosis is only for you to know how to handle your symptoms. Some people feel they cannot stay gluten free unless they get an "official" diagnosis. So they go back to eating gluten for 3 months or so to get tested. It doesn't sound like this will be necessary for you given the relief you have felt in your short time being gluten free. If you are concerned about blood work just be sure sure you have it checked frequently to be sure the vitamins Celiacs are often deficient in are at normal levels. I wouldn't doubt it at all if all of your "viruses" and "infections" completely disappear in the next year. It happened to my son. He is 17 and gluten free for one year. This is the first year he hasn't had a lot of "infections and viruses" causing him to miss school. It can happen. Neither of us were tested but we had such a dramatic response to the diet and such drastic negative reactions to cross contamination that there is no doubt in either of our minds. I am just thrilled when young people figure this out and don't have to be misdiagnosed for years like me and a bunch of others. It really makes me happy to read posts such as yours. Thank you...and enjoy your new found health!

Bubba's Mom Enthusiast
Bubba's Mom
Posted

If going off gluten has you feeling better..than obviously, it doesn't agree with you?

The blood tests are wrong 20-30% of the time. Did you have the gene test? Sometimes that can show if you're likely to have a gluten problem.

I agree with the others..you are very fortunate to be figuring this out at such a young age. So many of us go undiagnosed, or misdiagnosed for years and as a result have a lot of other health issues.

Best of luck to you!

Ninja Contributor
Ninja
Posted
  • Author

Thanks for the support!

Something has got to change with our doctors

eatmeat4good Enthusiast
eatmeat4good
Posted

Don't let the placebo effect concern you to the point that you doubt yourself on this. And I might also mention that if you start to feel lousy say...in a month or two...you should be aware that some people develop increased sensitivity to gluten and start reacting to smaller and smaller amounts. Meaning trace gluten and cross-contamination become more significant. It would be a tragedy if you found the "placebo effect" to wear off and years later find out that you were really reacting to gluten after all but you didn't realize it because it was trace gluten. Thought this might be worth mentioning just in case... Still happy for you!

Ninja Contributor
Ninja
Posted
  • Author

Thank you!

Figuring things out on your own can be so satisfying, but it leaves you somewhat alone. I just feel like I cannot get enough information — there's so much out there.

I go back to see my regular doctor (who has not been involved in the gluten process as of now) in about a week. I saw him last week which was when he dx'd the acid reflux — he offered to run the celiac panel (good sign!), except that me having been gluten-free didn't quite sink in. To his credit, he was very busy and I took a cancellation, so it was an in and out visit. We'll see what happens and I will keep you guys posted.

~Laura )

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  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      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...
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      High DGP-A with normal IGA

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  • Posts

    • 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
      Finding gluten free ingredients

      By captaincrab55 · Posted

      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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