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My Son May Have Celiac

Tinkerszs

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Tinkerszs Newbie
Tinkerszs
Posted

Warning - - -my post rambles!

I'm new and looking for some info! Thanks!!!!

Went the GI today. They will do a biopsy on the 14th. I'm really worried. His IGG was 91. That seems very high. Is it? No one is giving us much info. He has strange bowel movements. Constipated one day and mushy the next. He is 16 mths old and weighs only 19lbs. He hasn't lost weight, but he hasn't gained much either. He also has reflux so he will be tested for that during the biopsy. Any personal experiences would be wonderful! Thanks for letting be rattle on.

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gf4life Enthusiast
gf4life
Posted

Hi Tinkerszs,

Welcome to the board, and don't worry about rambling (which you did not do! You should see some of my posts, they go on almost forever!!) we all need to talk about our issues.

Your son's IgG is pretty high. I am glad they have him scheduled for a biopsy so soon. If the doctors did not tell you (some forget to mention it, others don't think it matters), please do not take your son off gluten until after the biopsy. It could cause a false negative by taking him off gluten products before the biopsy. Okay, that said I can tell you that you are not alone. The best thing for you to do is to read as much as you can and learn about Celiac/gluten intolerance before the biopsy. This will help you be prepared in the event your son tests positive.

Did he test positive on any other blood test other than the IgG? It isn't necessary, but if he tested positive on the IgA tests (gliadin and tissue transglutaminase) then he will very likely be positive for Celiac. Especially with his health history. You are very fortunate to be finding out so early in his life. It will be easier for him to adapt to the diet if he never remembers eating gluten foods. My kids are 9, 7, and 4 and they are having a relatively easy time at adjusting, but they have thier moments where the diet gets frustrating and they feel like they can't eat anything. It helps that I am also on the same diet, so we eat the same, but I can understand their frustration.

Anyway, welcome and have fun reading. Try not to feel too overwhelmed. Gluten-free is not a death sentence, it is quite the opposite. Most of us on the diet are very happy to be able to get healthy without the aid of medication, surgery, hospitalization, etc. It can seem overwhelming at first, but as you get into it, it gets easier.

God bless,

Mariann :)

CandCfam Newbie
CandCfam
Posted

Hi Tinkerszs,

It's CandCfam from Ovusoft :P (I'm seriously not stalking you - was just looking for info for my DD and ran across your post here ;) ...)

I actually think DD might have Celiac. We've had major issues with her bowels since about the time she weaned and started eating more solids. Mostly constipation issues - but often she'll have mushy poops, but it still hurts her to pass them.

I'm hoping that our ped will listen to me and test her. She has seen a Ped. GI once for the constipation, but she really didnt' listen to all my concerns. We do go back to her on the 14th for a recheck.

I'm praying that it's not Celiac - but will be glad just to get an answer either way.

How did you get your ped to test him initially, or get the Ped GI to test?

GL & I hope you get your DS's problems figured out.

Off to look for more information... see you around ;)

plantime Contributor
plantime
Posted

I'm glad your son is getting tested so quickly. Just do not put on gluten-free diet until after the biopsy. This diet is a real life-saver, literally. Even as expensive as some of the foods are, it is still cheaper than medication and surgery, and we can live relatively normal lives! Since your son is so young, if he is celiac disease, he will not develop a taste for gluten, so he will (I hope) have an easier time. He will definitely have a healthier life! Post any time, we all ramble! Happy reading!

Tinkerszs Newbie
Tinkerszs
Posted
  • Author

Hi CandCfam! The dr ran a whole bunch of blood tests because his bm are so strange. Soft and squishy one day and hard hard the next. I even find undigested food in them sometimes.

When we looked at his results we only found the IGG. My husband is trying to get ahold of the ped to find out about the other numbers. I really felt that the gi didn't explain much.

What was your child's symptoms? I'm trying to compare.

It makes me so angry to have my child have to live a life like this. :( He is our miracle baby and we wanted things to be perfect. Do pregnancy complications have anything to do with this?

How bad is the biopsy? I'm kind of scared. Do any of your children have reflux? Is there anything I should have done when he was younger to avoid this from happening?

How is the research coming? Do you think one day they will be able to eat normally?

CandCfam Newbie
CandCfam
Posted

Hi again,

DD's symptoms started out with what seemed to be an allergy to milk - she'd have milk, get constipated and get the nastiest diaper rash you've ever laid eyes on.

The constipation continued after taking her off dairy.... but not as bad, because the Ped GI put her on MiraLax. She's now having constipation bad even on the MiraLax. She doesn't eat hardly anything. EXTREMELY picky. She'll eat sausage - but even thing that she used to like, she quit eating. She won't eat fruit... well the last week she's been picking at apple slices - but doesn't really consume much.

Her anal area gets really raw and bleedy when she strains to poop. Currently we are on day 3 of straining -literally ALL DAY - to try to poop. I think the raw rearend is making her hold it in even more.

Some days tho she has really mushy poop, and still screams in pain. 4 days ago she had 3 really mushy poops, and then she got backed up - for no apparent reason, and like I said, on the MiraLax.

So, that's some of what we're dealing with.

I'm sure there are other symptoms that I am forgetting to post - but my mind is mush right now from the stress of it all & from knowing our ped is going to likely blow off my concerns.

Tinkerszs Newbie
Tinkerszs
Posted
  • Author

We spoke to the ped today about his results. The IAGG (?) was 91. But the other test they did was very low. Negative she said. Any ideas on what this could mean?

My husband and I were thinking . . .when he was a baby on formula he had strange poopies. He didn't have any gluten. Could it possibly be something else?

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lauradawn Explorer
lauradawn
Posted

was it the IGG or IGA???? If it's the IGG that can signify many different things.. It's not used alone in determining Celiacs. There are c aouple other tests that go along with it to determine if it could be Celiac or not.

Formula can have gluten in it, as well as if he was nursing at all. If you were eating gluten it would pass through the milk. It is possible there is something else, especially if the test is the IGG, however gluten can be in the formula.

Tinkerszs Newbie
Tinkerszs
Posted
  • Author

IGG was 91 and the IGA was negative.

Caleb was formula fed. He was on Similac Lactose Free.

lauradawn Explorer
lauradawn
Posted

From my experience I would guess the Dr will say that he is fairly confident it is not celiac. Doesn't mean that's a 100% accurate diagnosis, but if the other tests were negative............

My Dr explained to me that the higher # of IGG can be showing a number of things, such as a leaky gut, or other allergies... For my kids he thinks it is the diary that they are intolerant to.

I dont' completely understand how that works, but I do know from my experiences that the Dr's do not rely very much on a positive IGG alone.

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      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.
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    • 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

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      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.
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      High DGP-A with normal IGA

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      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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