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SafeSpuds Newbie
SafeSpuds
Posted

My little girl (will be 3 years old in October) has just been diagnosed with Celiac Disease. She has been having problems since she was 13 months old and after allergy testing came up empty, the ped sent us to a GI doc who did a coloscopy and endoscopy. The blood test and biopsy was negative for Celiac (and everything else...) All they could find was colitis and acid reflux, which the doctor said was caused by the colitis, so he treated the colitis and not the reflux. Nothing changed. We moved to another state and was finally seen by another GI doctor (After 2 months of waiting to get in and then another month waiting for another colonoscopy and endoscopy). He put her on Prevacid which helped with a lot right off. The doctor called me on Monday and let me know that the biopsy came back positive for Celiac this time. I immedately put her on a Gluten-Free diet, so she hasn't had any gluten since Monday around lunchtime.

Today her diarrhea is much worse. I don't know if she's got a virus or something or if she's not reacting well to the diet or what. We haven't taken her off dairy yet. Should I wait a few days before doing that or just jump into that too?

This is all a bit overwhelming at first, although the Gluten Free hasn't been as difficult as I had feared.

Alicia

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Guest j_mommy
Guest j_mommy
Posted

Be sure to be concious of any hidden gluten or CC. But that said the same thing happened to be after a few days of gluten-free. It takes awhile for your body to get straightened out!

My Dr suggested to go off dairy for awhile and then add it back after awhile(a month or so of no symptoms of celiac). I knew I was lactose intolerant before going gluten-free. I can handle a glass of milk a day, anymore than that and it's too teh potty!

Many people don't know they are Lactose intolerant until after they start the diet b/c teh sypmtoms are very similar.

I hope your little one feels better soon!!!!!

Guhlia Rising Star
Guhlia
Posted

Lactose is processed on the ends of the villi. The villi are what is damaged by Celiac Disease. Many Celiacs are lactose intolerant until they have reached a certain level of healing. I would say to go ahead and eliminate lactose for the time being and reintroduce it in a few months. You also may be witnessing a slight gluten withdrawal. Keep her on the diet if she was diagnosed with Celiac. False positives are virtually unheard of.

Some people take longer to heal than others. There are some people who take months to notice any benefits with the gluten free diet. Others react almost instantly, like I did. Give her time to heal. The next few weeks or months will likely be a little rocky, but she'll be SO much healthier and happier for it.

debmom Newbie
debmom
Posted
My little girl (will be 3 years old in October) has just been diagnosed with Celiac Disease. She has been having problems since she was 13 months old and after allergy testing came up empty, the ped sent us to a GI doc who did a coloscopy and endoscopy. The blood test and biopsy was negative for Celiac (and everything else...) All they could find was colitis and acid reflux, which the doctor said was caused by the colitis, so he treated the colitis and not the reflux. Nothing changed. We moved to another state and was finally seen by another GI doctor (After 2 months of waiting to get in and then another month waiting for another colonoscopy and endoscopy). He put her on Prevacid which helped with a lot right off. The doctor called me on Monday and let me know that the biopsy came back positive for Celiac this time. I immedately put her on a Gluten-Free diet, so she hasn't had any gluten since Monday around lunchtime.

Today her diarrhea is much worse. I don't know if she's got a virus or something or if she's not reacting well to the diet or what. We haven't taken her off dairy yet. Should I wait a few days before doing that or just jump into that too?

This is all a bit overwhelming at first, although the Gluten Free hasn't been as difficult as I had feared.

Alicia

cruelshoes Enthusiast
cruelshoes
Posted

When I first went gluten-free, it took me 3 days before I started to notice any difference at all. It took a good 3 months before my symptoms were mostly gone. Additionally, it sometimes seemed that I would slide backwards in my healing occasionally, and then start getting better again. I don't believe it was gluten exposure but, rather, my body trying like heck to normalize itself.

So be patient and watch out for the hidden gluten and CC.

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    • 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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      High DGP-A with normal IGA

      By knitty kitty · Posted

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