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New Here With A 3 Year Old Possible Cd

rgeelan

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rgeelan Apprentice
rgeelan
Posted

My son has been sick for about 3 months now and we are dealing with Military doctors so we had to go in multiple times over the same issues. He has a chronic stomach ache, he has diarhea and vomiting, just generally unhappy... 2 weeks ago they did blood tests and yesterday (after 2 days of calling and getting the run around from the clinic) our ped finally got ahold of us and told us one of his tests came back + for celiac disease. We go for more bloodwork tomorrow and then a biopsy on Friday. I am hoping that this is the answer to more than just why he has been sick the past 3 months, but maybe also to his mood swings and sleeping issues also.

If his biopsy confirms the diagnosis of celiac disease than my daughter and I will also be tested for celiac disease because she has the same symptoms he had as a baby and I have many of the common misdiagnoses...

Anyway just wanted to introduce myself.

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tarnalberry Community Regular
tarnalberry
Posted

Welcome! Good luck on the tests and biopsies, and don't forget to keep feeding her plenty of gluten until those tests are over!

rgeelan Apprentice
rgeelan
Posted
  • Author

We started taking the gluten out today because we wanted to make him feel better and they said it wouldn't effect the tests done tomorrow or Friday, is this wrong? I am sure he would love a pb and j on wheat toast. lol!

Btw is there an easy way to find new posts here? I posted then it dissapeared and took a while to find it again. lol

gf4life Enthusiast
gf4life
Posted

It's just a matter of a day or two. If I were you I would keep him on gluten for that amount of time. The intestinal lining heals quite quickly and you don't want to increase the risk of getting false negative results.

That said, When you post a new topic it goes to the back page of that forum, waiting for a moderator to read it and make sure it is in the correct area. Then it gets "pinned" and moves to the front page where more people will see it. It will also show up on the list of new posts if you click on the "View New Posts" button up near the top of the page. And you can always find your own posts (or any member's posts) by clicking on the member name on the left side of the screen on any post and then click on "Find all posts by this member". It will give you a list of all posts made by any member you choose in order of most recent.

I hope this helps. celiac3270 put up a topic called "All Newbies, Please Read" and it contains a lot of great information to help you get your way around the message board easier. I suggest you check it out. He explains it better that I do. You can go directly to it with this link:

Open Original Shared Link

God bless,

Mariann

tarnalberry Community Regular
tarnalberry
Posted

There seems to be a fair amount of disagreement between many doctors and all of us celiacs about how being off gluten - even for a short period of time - can alter test results. Of course, the really good celiac doctors do say not to go off it.

The trouble is, she might not have enough healing in that time to make a difference on the biopsies, but she might, particularly if you've got a lab tech who's looking for TOTAL atrophy, AND she's a fast healer. You may still get an accurate result, but by taking gluten out of her diet before the test, you increase your chances of getting a false negative.

As for the posts... I admit, I never look by section any more, and just always klick "view new posts" when I log in. :-) Such a handy tool :-)

Kim Explorer
Kim
Posted

Also, as long as your child is having the biopsy, ask the doctor to be sure that s/he is taking at least 6-7 samples while in there. some docs only take one and that's not enough because that one could happen to be an undamaged spot.

good luck. Kim.

celiac3270 Collaborator
celiac3270
Posted

You can find all new posts easiest in two ways:

- When you get to the site, go to the bar towards the top whree you have the option to log out, use my controls, search the board, etc. There is a button there that says "view new posts". Click on that and it will take you to all the posts that came after your last visit to the board.

- When you're at the first page of the board, the spot where you can see which members are online, view top ten posters, etc., there is a tab next to view top ten posters today that says "today's active topics". Click on that and you can get all the topics posted within the past 24 hours.......additionally, you can change the date range to see all topics in the past say, two days.

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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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