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My Daughters Other Problems


kittyme

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kittyme Newbie

I was just wondering if other people have this problem. My son (6) is non celiac disease. He goes to school and never gets sick. If he gets the flu it lasts 1-2 days and it is gone. My daughter (3) is celiac disease and gets EVERYTHING! She doesn't go to school. She is always sick!! If she gets the same flu as my son it lasts in her for 5-7 days. She goes to the hospital for it (last time was last month for 5 days). This flu season alone was 3 times to the hospital!!!! Is it normal to be sick like this when you have celiac disease? We are kinda new at it (6 months gluten free). I have asked the doctors but you know what that is like. I don't really get along with many of them any more. Considering I have been threw 2 Gastros, 5 Peds, and 2 regular Docs with her. That ,however, is another very long, frustrating, almost violent:) story. Sorry to ramble, but if anyone could answere if this is normal it would make me feel better about the situation. Thanks


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sherylj Rookie
I was just wondering if other people have this problem. My son (6) is non celiac disease. He goes to school and never gets sick. If he gets the flu it lasts 1-2 days and it is gone. My daughter (3) is celiac disease and gets EVERYTHING! She doesn't go to school. She is always sick!! If she gets the same flu as my son it lasts in her for 5-7 days. She goes to the hospital for it (last time was last month for 5 days). This flu season alone was 3 times to the hospital!!!! Is it normal to be sick like this when you have celiac disease? We are kinda new at it (6 months gluten free). I have asked the doctors but you know what that is like. I don't really get along with many of them any more. Considering I have been threw 2 Gastros, 5 Peds, and 2 regular Docs with her. That ,however, is another very long, frustrating, almost violent:) story. Sorry to ramble, but if anyone could answere if this is normal it would make me feel better about the situation. Thanks

Dear Kittyme.

From what I have read celiac can lower ones immune system,,esp. in a younger child.

I am currently reading "Celiac Disease" A hidden epidemic. Some of it is over my head :P

There is a chapter on dealing with celiac in younger children which gives some common sense guidelines. The rest of the book is an interesting mix of information. If my brain fog would clear I might be able to read and comprehend more of it.

My days of being a mother of young children are over but I recall the frustrations of dealing with illness and just the sometimes overwhelming feeling of trying to do everything "right". So keep working on the gluten-free diet, enjoy the good moment inbetween the problem days.

Are her weight and growth pattern within norms?? How is her appetite?

I like my ped. in Plymouth, MI Child Health Associates. Even though my youngest is 18 they are still seeing her for her low weight issues . They have responded very well to my questions.

Sheryl

Juliet Newbie

We were told that it took 6-12 months for the intestines to fully heal when they're young w/ Celiac Disease, and until then the immune system is weakened. The first cold/flu season after our then 2 year old was diagnosed, he was sick from October through March and still picked up things no one else did until around May. He got strep throat in June, too. This season at 3 years old, he has been sick, but all of January he was healthy, and he normally will go for at least a week, possibly two, before he gets sick again. He did get the flu shot and has not had the flu at any time this season, and all the colds he did get (several of which he also gave to his sister, father, and me :) ) didn't slow him down in the slightest. He maybe slept an additional 30 minutes on the first couple of days, but he was running around outside or at the mall when it rained every day that he has been sick. It's a dramatic difference from last year.

Generic Apprentice

I used to get every bug, food poisoning, cold, you name it that came within a mile of me. I used to be sick more often than I was well. I was diagnosed at 13 y/o. I continued to be sick like that until I went to accupuncture about a year and half ago.

Hopefully she won't have those issues. Make sure you give her a good daily vitamin and have her vitamin levels checked for defficiancies. I remember I was defficent in a bunch of the fat soluable ones (A,D,K,B etc.) and that probably contributed to the poor health issues.

kittyme Newbie
Dear Kittyme.

From what I have read celiac can lower ones immune system,,esp. in a younger child.

I am currently reading "Celiac Disease" A hidden epidemic. Some of it is over my head :P

There is a chapter on dealing with celiac in younger children which gives some common sense guidelines. The rest of the book is an interesting mix of information. If my brain fog would clear I might be able to read and comprehend more of it.

My days of being a mother of young children are over but I recall the frustrations of dealing with illness and just the sometimes overwhelming feeling of trying to do everything "right". So keep working on the gluten-free diet, enjoy the good moment inbetween the problem days.

Are her weight and growth pattern within norms?? How is her appetite?

I like my ped. in Plymouth, MI Child Health Associates. Even though my youngest is 18 they are still seeing her for her low weight issues . They have responded very well to my questions.

Sheryl

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    • knitty kitty
      @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
      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
      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
      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
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