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Confused And Frustrated

runnerjen

By runnerjen
in Coping with Celiac Disease

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runnerjen Apprentice
runnerjen
Posted

I've had IBS symptoms all my life. I've been to different Dr's and finally one suggested maybe celiac. So first I had bloodwork done, in December, and my tTG-IgA was 32 (on a scale of 0-19 units), IGG 29.8 (scale of 0.0-24.9) and IGA was <20 (scale of 0.0-24.9), so slightly elevated and Dr wanted me to have an endoscopy. He took 8 samples and all came back perfectly healthy, no damage to the villi at all. The samples were sent to a lab that specializes celiac, so I'm confident in the results. I was told to go on the gluten-free diet for a few months and then go back for more bloodwork. I've been gluten-free now since mid-Dec and my symptoms have not improved AT ALL! I still haven't gone in for the bloodwork yet, I was planning to go this week. But then last night I simply couldn't take it and I ate bread! I've been so good, but I've just had a really stressful week and I just needed the bread. I feel the same today as I feel every day, still diarrhea in the morning, like EVERYDAY, so nothing different. But today I'm really upset with myself for the slip up, but I'm also confused as to whether I really even HAVE celiac or not. My PCP says no, that a lot of people have a slightly elevated tTG-IgA and it doesn't mean anything. And my GI doc was certain I'd feel better in a few days after being gluten-free, but I never did.

Anyone have any advice? I'm going to call the GI doc today for advice, but just wanted to see if anyone else had a similar experience.

Thanks for listening!!

jen

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Jo.R Contributor
Jo.R
Posted

I'm sorry your not having much luck with the diet. I don't have much to offer from personal experience, but I have read a lot of different stuff on this site.

First, are yor positive you are 100% gluten free. There are people on this site who can't even kiss someone who has just eaten gluten. Have you checked your cosmetics, healthcare products, medications, cross contamination in the kitchen.

Second, many people who have Celiac have multipule food allergies, dairy, soy, gluten, corn, nightshades ect. I know I am showing signs of dairy problems (I don't know if it's the protein or the lactose). You may need to go on a super simple diet. I know other people will give you more specific advice.

Good luck!

Also, don't beat yourself up. It's not worth the stress.

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runnerjen Apprentice
runnerjen
  • Author
Posted

Thanks JoR. I'm fairly certain that everything I've eaten, up until last night, has been gluten free. I pretty much eat the same things every day, and it's all gluten-free. I've been to a nutritionist who had me keep a food diary and looked at what I ate. She said it was all gluten-free. I don't have anything in my apartment that is not gluten-free, as I got ri of it all prior to starting the diet. All of my lotions and shampoos are all so gluten-free. I'm going back to the nutritionist in a few weeks, so I know she'll go over what I've eaten again and make other suggestions. I do eat a lot of dairy and soy, so that could be it too. Guess I'll have to work on that next!

THANKS

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RiceGuy Collaborator
RiceGuy
Posted

It took about six months before I saw any change. Then it really kicked in, and I knew I was on the right track.

So I'd say it's still quite possible the diet will help, and as stated there are always other intolerances/allergies to consider.

Hope you get the answers you need.

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chocolatelover Contributor
chocolatelover
Posted

Runnerjen, I'd encourage you to go to www.enterolab.com and look at the FAQ page--it talks a lot about gluten sensitivity and the fact that many people are sensitive without being full-blown celiac. Also go to www.glutensensitivity.net. That site also has some really pertinent information about it. I suspect you are like me--negative bloodwork and negative (screwed up) biopsy, but still gluten sensitive. Also, there's www.thefooddoc.com--he's another believer in the "gluten iceberg", in which celiac is just the tip of the iceberg when it comes to gluten intolerance.

I'm awaiting my enterolab results to see if it picked up anything the bloodwork did not. I've also heard from many people that it can take months for the results to be seen and felt. Pretty frustrating, but if you stick with it long enough, it will probably make a huge difference in your quality of life!

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happygirl Collaborator
happygirl
Posted

runnerjen:

I wish there was an easy answer for you on this one. I would try to stick with it some more. Your bloodwork indicates a problem with gluten, whether it is Celiac or not, its hard to say. But Celiac damage can be patchy, so your biopsies do not rule out Celiac.

Are you eating out at all? Are you careful with cross contamination at home?

Have you tried an elimination diet to see if other foods are bothering you?

Best of luck,

Laura

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