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athome1998

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athome1998 Newbie
athome1998
Posted

I have totally stumbled upon this site but am so glad I did.

My husband and I for the past year and a half have been from doctor to doctor to social worker for our son who is now just over five. He is not bowel trained and he has these "grainy stools" and his poor bottom gets rashy and red and the will not sit on the toilet to poop.

Our doctor (family phy.) has said it may be behavioral...so we were sent to the Kinsmen center...nope he's good. after a year wait list and an Autism Spectrum test. Then he was sent to a speech pathologist who is now working on his speech.

I am now going back to my family dr. b/c I know it's physical! And I'm taking it into my own hands.

What tests exactly should I be asking for. I want to get my son diagnosed before school starts next year and have him not scared to go to the bathroom.

Thanks

Christine

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Dixiebell Contributor
Dixiebell
Posted

Welcome to the forum athome1998.

While you are having blood drawn you might want to go ahead and get vitamin and mineral levels checked too. I think the main one's are A, B's, D, E and iron. K might be one too.

Celiac tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG

ravenwoodglass Mentor
ravenwoodglass
Posted

After you are done having the tests run that were mentioned do try the diet no matter what the results. Children have an even higher rate of false negatives than adults. Does he have a rash anyplace other than his bottom? Is the rash blistery and itchy? The rash could be DH and that would be diagnosed by a derm who would biopsy the area next to the rash to look for antibodies in the intact skin.

athome1998 Newbie
athome1998
Posted
  • Author

He has been diagnosed with eczema when he was a baby. He had it really really bad, now it's just small bumps all over his body with patches once in awhile that pop up due to the weather. I try to keep his skin hydrated and lotion ed as much s possible.

But his bottom is really bad and he doesn't even like me touching it, he screams when I have to clean him or bathe him. I feel horrible. We have to pin his legs to get him fully cleaned b/c of the sandy grains all over. Poor little man. :(

Thanks for heads up.

After you are done having the tests run that were mentioned do try the diet no matter what the results. Children have an even higher rate of false negatives than adults. Does he have a rash anyplace other than his bottom? Is the rash blistery and itchy? The rash could be DH and that would be diagnosed by a derm who would biopsy the area next to the rash to look for antibodies in the intact skin.

eatmeat4good Enthusiast
eatmeat4good
Posted

I just read your post.

Thank God you found this cite and you are going to advocate for your son.

Poor guy, he is really suffering.

I wanted to let you know that I use Walgreens brand of Pain Relieving Ointment for the rashes and sores and even for the sore bottom.

It is Benzocaine. You might ask your Dr. if it is OK to use for your son. It helps a great deal with the pain. I tried everything but this is the only thing that ever provided any relief for the Dermatitis Herpetiformis, if that is what his rash is. Given that there may be some time between testing, diagnosis, and the time it will take for the rashes to heal after you go gluten free, I just wanted to give you something that may help your son's pain.

It is worth a try.

T.H. Community Regular
T.H.
Posted

I'd second going gluten free, regardless of test results.

A good friend of mine on an extremely limited budget has a little one who sounds very similar to yours. Grainy stools, horrific red, rashy bottom and such. She lucked out because three people in my family were diagnosed with celiac disease just a few months before the stool issues started, and we'd been talking about food issues and celiac disease, and so when it happened to her midget, she already had a head's up about it. Good thing, as she hasn't the money to pay for any testing and just had to figure it out herself!

Going gluten free has cleared it all up, too.

Also, going gluten free for my son - who was negative on the test - helped his speech and learning issues, so that can be gluten related, too.

athome1998 Newbie
athome1998
Posted
  • Author

Thank you for everyone that replied. When I first stumbled upon this site, I literally cried b/c it was like I was reading everything about my son on others posts.

I am definitely going in armed with Dr.s I want to see and tests I would like done. I am in Canada but that doesn't necessarily mean things get done any faster, if anything it's slower and things get overlooked, which is why I am getting as much information ahead of time. The blessing is we don't have to worry about the cost of test. Huge blessing on our part, b/c my son is my youngest of four.

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cap6 Enthusiast
cap6
Posted

athome1998 - i cried when I found this site too! It makes celiac so much easier to handle.

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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

      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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