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The 'specialist' Said To Push The Glutien Tonight

rgeelan

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rgeelan Apprentice
rgeelan
Posted

We have our son scheduled for his scope and biopsy tomorrow morning at 8am and the doctor said to push the gluten tonight... We were thinking pizza since if he has celiac disease he won't be able to have real pizza again... :( Is that enough or is there something special I should do?

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celiac3270 Collaborator
celiac3270
Posted

I'd say that's good enough.........pizza was the one gluten thing that ALWAYS caused a reaction....I didn't get one after my morning bagel or anything, but pizza always triggered it.......must be loaded. Additionally, ask him if he wants anything special that has gluten--a candy, cookie dough ice cream, etc.........make it his last gluten feast, I guess. Good luck with the biopsy tomorrow. I'm getting my second biopsy on the 13th to make sure the diet is working for me.....let us know how it goes.

-celiac3270

gf4life Enthusiast
gf4life
Posted

That would probably be fine. It won't really affect the damage, since the damage that is seen in the intestines is what has happened months ago. So it isn't like it is going to show more damage just from one more night of gluten, no matter how much you feed him. Let him eat until he is full, but don't force more on him.

Good luck with the biopsy tomorrow. We'll keep you in our prayers.

God bless,

Mariann

gf4life Enthusiast
gf4life
Posted
pizza was the one gluten thing that ALWAYS caused a reaction....

celiac3270, this might have had something to do with the acid from the tomato sauce and the dairy from the cheese. What do you think?

God bless,

Mariann

rgeelan Apprentice
rgeelan
Posted
  • Author

Thanks... The doctor went over things with me and he says that the blood tests that our ped ran 1 came back positive and it is the most sensitive and accurate of the Celiac blood tests. But the other 2 were negative??? Combined with my sons symptoms though he says he is 75% positive that he has celiac disease. He offered to do another blood tests and said that if it comes back the same way he would be 99% positive, but the base doctors won't take that as a positive diagnosis. William still has to have the biopsy for them to count it... So I said lets just do the biopsy since we will have to have it eventually... No reason I could see to put it off... Although the good news is yesterday we went all day gluten-free and he hasn't thrown up or had diarhea at all today!!! YAY! So the specialist did say that if it isn't fully celiac disease yet he would bet that he at least has a storong gluten allergy and is probably prone to get celiac disease later... So looks like our diet is going to change no matter what... A positive biopsy is the only way the base will test the rest of our familiy though...

gf4life Enthusiast
gf4life
Posted

Something strange happened and it posted my message twice. Sorry about that...

Mariann

rgeelan Apprentice
rgeelan
Posted
  • Author

Marianne I was thinking the same thing about the pizza causing such a reaction. I would be sure somethign like a PB and J on wheat bread would be worse. lmao! Actually I tried to give my son one for breakfast so he would eat and he didn't want it! Took like 2 bites and asked for one of our gluten-free rice snacks... LOL! So maybe this diet won't be so hard on him after all...

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gf4life Enthusiast
gf4life
Posted
So maybe this diet won't be so hard on him after all...

My oldest son who has behavior issues as his main symptom and not very many digestive complaints is the one who complains occasionally about the gluten-free diet. He is terribly sensitive to dairy though! My younger son who has TONS of symptoms and GI complaints says he doesn't even want to ever touch anything with gluten again, let alone eat it! The diet isn't so hard for them to get used to, but it helps in our house that we all need the diet. My husband is the only one not gluten-free and he usually eats what we eat when he is home. He doesn't eat gluten-free away from home, although he probably should! He won't get tested yet... :rolleyes:

Isn't it funny how kids start to avoid the foods that bother them. We should all pay better attention to what our bodies tell us. Symptoms are the bodies way of telling us there is something wrong! We need to pay attention to them.

God bless,

Mariann

celiac3270 Collaborator
celiac3270
Posted

I think it might have been the tomato sauce, Mariann..........although I still have symptoms, eliminating the tomato sauce has helped make the digestion process easier on my body. I'm not sure if the cheese caused a reaction......I guess that might've happened, too (intestines couldn't handle the dairy, acid, AND gluten at the same time).

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    • rei.b
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      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 😅
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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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