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Diagnosing A Sibling

Amie

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Amie Newbie
Amie
Posted

Sorry.. this will look like a repeat post. I tried to edit my last one to include another question and I deleted it.. :) Newbie!!!

My now 10yo son was diagnosed with Celiac at 4.5y. He has been Gluten free since. Before diagnosis, He was extremely symptomatic... he had fallen off the growth chart, had weight loss, diahrea, projectile vomitting, migraines, leg cramps, etc.etc.etc... He has been doing great since the changes.

I had my 4yo tested last summer because he was getting alot of stomach aches, and he seemed to have diahrhea alot. Also, issues with anxiety. I was surprised when it came back negative. The blood work was sent to Mayo clinic, and I know they are considered reliable for Celiac testing. Since then he has been to his 5yo check -up and he has not grown.. weight is the same, but he still has diarhea alternating with pasty stools and occasional headaches. His also seems to struggle with his behavior. At times he is ahead of his age in behavior and other times he will have a couple days where he seems to have a very hard time controlling his emotions. He can get sad easily and seems very anxious. I have since learned that Anxiety is a symptom of celiac, and I am curious if anyone else has had any experience with this related to Celiac and if so, did the issues get better on a gluten-free diet? Also, is there anything else connected to Celic given that we have it in the family that I should be looking into ? Any other food sensitivites, etc that maybe causing these issues?

His doctor agreed to have him tested again for Celiac, and we are awaiting the results. Given that we will be using just the local lab at our childrens hospital, I am wondering how reliable the results will be. (They do not send out to Mayo clinic) Is it imparitive that I retest him if it is negatvie and send them out to promethius(which I have since learned they can do? Can I trust the results if they are negative? Also- I have also recently learned that if you have a child with Celiac ond others show symptoms, you should retest them every couple of months? Has anyone else done this and found that they tested negative one month and then positive two months later? just curious.

Any advice on these issues from those who have btdt would be much appreciated!!

Thanks for listening!

:)

Amie

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Amie Newbie
Amie
Posted
  • Author

Sorry.. this will look like a repeat post. I tried to edit my last one to include another question and I deleted it.. Newbie!!!

My now 10yo son was diagnosed with Celiac at 4.5y. He has been Gluten free since. Before diagnosis, He was extremely symptomatic... he had fallen off the growth chart, had weight loss, diahrea, projectile vomitting, migraines, leg cramps, etc.etc.etc... He has been doing great since the changes.

I had my 4yo tested last summer because he was getting alot of stomach aches, and he seemed to have diahrhea alot. Also, issues with anxiety. I was surprised when it came back negative. The blood work was sent to Mayo clinic, and I know they are considered reliable for Celiac testing. Since then he has been to his 5yo check -up and he has not grown.. weight is the same, but he still has diarhea alternating with pasty stools and occasional headaches. His also seems to struggle with his behavior. At times he is ahead of his age in behavior and other times he will have a couple days where he seems to have a very hard time controlling his emotions. He can get sad easily and seems very anxious. I have since learned that Anxiety is a symptom of celiac, and I am curious if anyone else has had any experience with this related to Celiac and if so, did the issues get better on a gluten-free diet? Also, is there anything else connected to Celic given that we have it in the family that I should be looking into ? Any other food sensitivites, etc that maybe causing these issues?

His doctor agreed to have him tested again for Celiac, and we are awaiting the results. Given that we will be using just the local lab at our childrens hospital, I am wondering how reliable the results will be. (They do not send out to Mayo clinic) Is it imparitive that I retest him if it is negatvie and send them out to promethius(which I have since learned they can do? Can I trust the results if they are negative? Also- I have also recently learned that if you have a child with Celiac ond others show symptoms, you should retest them every couple of months? Has anyone else done this and found that they tested negative one month and then positive two months later? just curious.

Any advice on these issues from those who have btdt would be much appreciated!!

Thanks for listening!

Amie

Nancym Enthusiast
Nancym
Posted

Given the high probability that there exists a non-celiac gluten sensitivity, something many of us have figured out even if our doctor's haven't, why not just try the 2nd child on a gluten free diet and see if it relieves their symptoms?

I think there's a lot to be said for the entire family going gluten-free to support the family member with a gluten sensitivity. Less risk of cross-contamination, fewer meals to cook, plus you're not making the celiac feel like they're weird and out-of-place. And finally, you and your husband passed on the genes, it is possible that you could benefit from the diet as well.

Ursa Major Collaborator
Ursa Major
Posted

Oops, sorry about that.............Amie, you submitted this post twice, and to get rid of the duplicate, I merged the posts, not knowing it would then also duplicate your original in this post (the last time I tried this, it didn't do that, just put any responses in.......but there were no responses yet). I am still new as a moderator.

The problem with little children is often, that their bloodwork comes back negative initially, and turns positive several years later, after more damage has been done by the gluten. A biopsy of the small intestine could find damage, even when the bloodwork is negative.

I agree with Nancy, it is likely that your younger son either has celiac disease or is gluten intolerant. The way to find out is to have him eat gluten-free too, and to see what happens.

Tony'sMom Rookie
Tony'sMom
Posted

Hi Amie.

My son was diagnosed 3 years ago. At that time the whole family was tested and came back negative. We were all tested again this past December, again with negative results.

I just had my dd tested for the 3rd time Monday. She's starting to have some issues that I felt resembled Celiac- stomach pains, constipation, lack of growth, no appetite,etc. There are other symptoms that she has but they also could be related to her Cerebral Palsy.

I had asked about sibling testing not too long ago and the answers I got seemed to indicate testing every 3-5 years.

If you think he would benefit from the gluten-free diet than give it a try. It certainly won't hurt him :)

I hope you get your test results soon.

francelajoie Explorer
francelajoie
Posted

I don't know if anxiety is a symptom but I certainly have it :(

I bought some "nerve tonic" cause my heart was just beating so fast I couldn't sit for 2 seconds. I'm better now but I think that's where my celiac started. I'm a pack of nerves I tell ya. Thank goodness for red wine :D

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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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      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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