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Questions To Ask The Ped At Next Visit?

The Kids Folks

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The Kids Folks Apprentice
The Kids Folks
Posted

Hi- I have a question for this wonderful group... Quick history, this past fall, DS (7yrs) was tested (blood) and he tested negative. Although I still question whether or not he received the full panel. Went through a lot btwn the ped and the ped GI treating symptoms and not wanting to get to the issue. Basically, they kept telling us that he's just that kind of kid? Trying to tell me that this was normal, DS symptoms chronic C, gas, bloating, and muscle/joint aches. He had slow growth or I should say no growth! He had almost fallen off the growth chart, under the 3rd percentile. Low or borderline albumin? and something else (sorry I don't have his records with right now). We also had a bone scan to see where he fell there... he didn't quite make the numbers that the ped wanted to see in order to recommend more testing - endoc, etc. She said that there needed to be an 18 month difference btwn his age and the age he measured and DS was only at a 16 months difference?

I'm only 4'11" so basically she felt that he was "like" me so I should stop worrying and life would be fine! Wrong - you know what happens when Mom's intuition kicks in!"

Sorry this is getting so long... We decided to go gluten free as a family in October 08. It has been life changing to say the least! DS has grown almost 1.5 inches and has gone up a size in clothes. He no longer has the gas, bloating, and chronic C. He has adjusted beautifully.

Okay, so finally to my question... we have switched ped's and I am thinking of taking him in to be "checked" at his 6 mo gluten free to make sure that everything is going well and that we aren't missing anything. What types of things should we be looking for and asking. Any tests? I've interviewed this ped and she seems really willing to listen and understands the "instinct" things. I just don't want to miss anything. I truly wish that I would have followed my instincts sooner. I want to make sure that he is getting everything that he needs nutritionally and that the growth continues (although I would like to see it happen a little faster!)

Any thoughts on what we should be looking for, asking or testing would be appreciated!

The Kids Folks

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ang1e0251 Contributor
ang1e0251
Posted

Right off I'll tell you I'm not medical expert nor do I have a child with celiac disease. I'm the one with it and I am self diagnosed. But I have learned a lot in the past year and I'll give you my two cents.

I would ask for a celiac panel. It should be negative but you will have the numbers on record for future in case other conditions come up in the future. If it should come back positive, you will have your answer and test numbers to compare his progress to in the future. It does take time to heal so it could come back positive. Just be prepared for it to be negative.

Many allergists that I have heard of are telling parents that an elimination diet is strong proof of an intolerance. Ask your ped if she agrees. If so she should accept the dietary limitations you've been exercising. She may ask you to perform a challenge, in other words let him test eating gluten again and report his reaction. This is fair since she's taking your word and his records as the only proof of his condition. A challenge is usually standard for allergists using the elimination diet method.

His vitamin levels should be tested. Malnutrition from celiac disease is very common and correctable.

As for other questions and tests, the parents of children with celiac disease should advise you on that. Good luck and let us know how he progresses. He's lucky to have such an intuitive Mom!!

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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
      Finding gluten free ingredients

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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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