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Any Advice Would Be Appreciated?

key

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key Contributor
key
Posted

Ok, here is my problem. I have a son that was just diagnosed with celiac disease. He is 15 months. Then I have had all sorts of symptoms of celiac disease and was out of town and started on the gluten-free diet. I felt SO much better in just a week. I am sure some things were still improving. Anyway, I had been on the diet for basically 3-4 weeks, cheated somewhere in the middle and felt really sick. SO my blood work comes back and he said it was borderline and wanted to do the endoscopy. I told him I had been on the diet since the blood work. Other then trying to eat it again and getting nauseous, severe bloating and constipation. So I asked him how long I would need to eat it to cause damage. He said at least two weeks. I think longer.

THe one test Igg was positive at 66 (I believe normal is like 20 or less). THe number that he was concerned about was the Tgg or EMA (I believe these two are the same) and are the most specific for celiac disease. So one abnormal, but least specific for celiac disease. THe one that is a few points below abnormal is most specific for celiac disease. He called the tests borderline. I really think what happened is that I was on the diet too long before the blood test. I asked him why he thought it was still possibly positive and he said that most people that don't have celiac disease, would have a zero for the EMA. Has anyone else had that problem? I am scared of eating gluten and going back to feeling cruddy. He said lets just stay on the diet for now. I just wonder if I am going to feel like I have it a year from now. I know I feel better not eating it. LIke 100% better and I don't even know what would happen if I started trying to eat it constantly for the biopsy.

Has anyone else experienced this? What do you guys think? He seemed to think I did have it, but that if I was going to be on the diet with my son, then just stay on the diet and get tested maybe even later. Then I sort of think, well why not just start eating gluten and get the biopsy. Even though I am sure I would be sick.

Ok, I am rambling. I would greatly appreciate anyone's opinions?

Monica

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Guest nini
Guest nini
Posted

I say listen to your body... if you feel better not eating foods with gluten, then don't eat foods with gluten. If your child has it, Odds are, you def. have it too... (esp. if you were having symptoms and they improve on a gluten-free diet)... it's between you and your Dr. if you feel you need to have further testing, however, positive dietary response is just as valid an indicator. The medical community isn't going to tell you that because then they won't make any money off of you.

If your blood test was simply "borderline" after already being gluten-free (sorry, it still seemed elevated to me) that is still an indicator that gluten is not good for you. There are more GI docs coming out now saying that positive or even borderline blood tests are enough to dx celiac, and that the biopsy is no longer the gold standard. You will find a lot of info out here saying that you HAVE to have the biopsy in order to be sure you have celiac. I disagree, My dr. disagrees and like I said, listen to your body... talk to your Dr. about it of course, but remember, Dr.s are not Gods... they are people, they have egos and they make mistakes...

The gluten-free diet is actually a very healthy diet (or can be as long as you keep it balanced) so IMO it won't hurt you to be gluten-free with your son even if you aren't technically "celiac"

key Contributor
key
Posted
  • Author

Yeah, I know in my mind that I have it. The one symptom that has gone away is the anxiety I always had. I just felt different. I couldn't concentrate as well, was more irritable and then of course the GI symptoms are a huge relief. I guess I just wish that it had been a definite answer. Most people don't have a clue about celiac disease and so they think that you are making it up. I told my friend, "why on earth would I choose to eat this way for the fun of it?" I just know in my heart that I have it and I guess I just wanted the PROOF! Ha, I think though, that even if I wanted to cheat I couldn't or wouldn't, because I get too sick. No food is worth being sick from. I don't miss bread so much, but I grew up vegetarian and have never eaten any meat. I was somewhat dependent on the recipes with meat substitutes!

Thanks for your advice though. My doctor is wonderful and does feel that I have it. I think he thinks I will be faithful to do the diet because I feel so much better and I get sick when I eat it. He is happy to do whatever I want, but feels I need to be eating gluten if I am to have the biopsy.

ONe more question. What about everyone's insurance? Has anybody had problems with them dropping you or whatever?

Monica

mommida Enthusiast
mommida
Posted

Blood work is showing enough, your body is telling you that gluten is a problem. You can go through the endoscopy and they love to throw in the colonoscopy too, to rule out any other problems or health concerns.

Enjoy your gluten free, healthy life!

Laura

Guest nini
Guest nini
Posted

I did have problems with insurance. One company dropped me and another company refused to insure me. I was able to get on a policy through work and then carry it over into a personal policy after my boss was no longer able to provide insurance (small business, economy sucks)... I currently have Blue Cross Blue Shield and I'm going to do whatever it takes to keep them!

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