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So Confused!

runnerjen

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runnerjen Apprentice
runnerjen
Posted

Hello,

So I'm very confused about this. I've been sick for as long as I can remember with various stomach issues. I've always been told it's just IBS, but it's increasingly gotten worse over the years. I went to a new gastroenterologist who did the blood tests for Celiac and they came back positive. So he had me do an endoscopy back in December. I started the gluten-free diet the day after, and have been on it since. I haven't really notices the IBS like symptoms getting any better (mostly diarrhea), but I have noticed that I haven't had any migraines (which I would get weekly), my face has cleared up, I'm sleeping better and I'm not having the night sweats like I used to.

So this weekend I finally got a call back from the Dr. with the results from the endoscopy and it's normal. No flattening of the villi or any damage. So he told me that doesn't necessarily mean anything, as it could be a false negative and that I should remain on the gluten-free diet for another 2 months and then go back again for blood tests.

I'm so confused! I have an appt with a nutritionist next week, she specializes in people with gluten intolerances/celiac. But I just don't know if I should stay on the diet or not. It's so frustrating since my IBS symptoms haven't gone away!

Thanks for letting me rant a bit. Anyone else go through this?

Jen

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lovegrov Collaborator
lovegrov
Posted

If you hve celiac, you haven't been gluten-free long enough to heal. Some people continue with some symptoms for months and months. The things that have improved indicate the gluten-free diet is having a positive effect.

Your doctor is giving you the best advice. Your blood tests were positive and false positives for celiac are very rare. You most likely have it. Your doctor is also correct in that the biopsy could be wrong. Celiac damage can be patchy and they might have taken samples from healthy looking areas. Or the samples could have been read wrong. At this point, I would absolutely follow his advice. I'd also be grateful you have a dcotor who seems to know his stuff. Many doctors would come back and tell you you don't have it when in fact you very might.

richard

RiceGuy Collaborator
RiceGuy
Posted

I saw little or no change in digestive issues for about the first six months. Then surprise! What a difference it began to make. Therefore, as has already been noted, you should stay on the gluten-free diet longer. Besides, you already know it helps you with other things, so that in itself should help encourage you to keep moving forward, not back-step to where you began. Also watch for other food allergies or intolerances, as they can tend to show up after you go gluten-free.

GlutenWrangler Contributor
GlutenWrangler
Posted

You should definitely stay on the diet. It takes a long time to heal and restore normalcy. It is great that you are seeing a nutritionist. She may help speed your recovery. If you had positive blood tests, you have celiac disease. Fortunately, you were diagnosed before your villi flattened. It time, the villi would have flattened, and you would be in much worse condition. So stay patient and you will see more improvement as time goes by. Good luck.

-Brian

sonja69 Rookie
sonja69
Posted
Hello,

So I'm very confused about this. I've been sick for as long as I can remember with various stomach issues. I've always been told it's just IBS, but it's increasingly gotten worse over the years. I went to a new gastroenterologist who did the blood tests for Celiac and they came back positive. So he had me do an endoscopy back in December. I started the gluten-free diet the day after, and have been on it since. I haven't really notices the IBS like symptoms getting any better (mostly diarrhea), but I have noticed that I haven't had any migraines (which I would get weekly), my face has cleared up, I'm sleeping better and I'm not having the night sweats like I used to.

So this weekend I finally got a call back from the Dr. with the results from the endoscopy and it's normal. No flattening of the villi or any damage. So he told me that doesn't necessarily mean anything, as it could be a false negative and that I should remain on the gluten-free diet for another 2 months and then go back again for blood tests.

I'm so confused! I have an appt with a nutritionist next week, she specializes in people with gluten intolerances/celiac. But I just don't know if I should stay on the diet or not. It's so frustrating since my IBS symptoms haven't gone away!

Thanks for letting me rant a bit. Anyone else go through this?

Jen

Hi Jen,

I have also a negative diagnosis. I have bowel troubles since two decades and they turned into real problems a few years ago. now I am on a glutenfree diet,since doctors seems to unable to help me,I took things in my own hands. you already have some positive effects, so I recommend you to keep on eating glutenfree and try an elimination diet to rule out diary and soy and also fructose. I also have somepositive effects through the glutenfree diet, so I hope the problems will eventually disappear.

the problem with the endoscopy is that results are dependent on the location where the sample was taken, the damage in the intestine can be patchy and how expereienced the analyst is.

I had/have some serious drwbacks this week, since it is very difficult to maintain a normal life and being gluten- and lactosefree, you have to check every label and being careful and alert all the time, at least in the beginning. and, in the healing process, the body might be more sensitive to disturbers, since now the body can really take care about the real prblem. at least, that's what I believe and now, when you're feeling better you might be more sensitive, since mistakes, or other culprit foods will be like s sledgehammer. that's my experience: I had never stomach pain and nausea, could eat what I want, drink what I want (alcohol), and did not notice because I always already felt crappy anyway, so I did not notice 'outliers'. but now I feel them very hard with stomach pain and other issues.

keep on being glutenfree, be patient (I have to learn this too). a trial can't hurt!

good luck,

Sonja

Nancym Enthusiast
Nancym
Posted

Unfortunately food intolerances seem to come in multiples a lot of times. You might also be having problems with dairy, soy, nuts, eggs... long list of things. Best thing to do is try an elimination diet and keep a log of how you feel. Diary and gluten seem to be my issues, with soy kind of trailing along. Also, I have to really be careful how many seeds I eat (sunflower, pumpkin).

I really think this IBS thing is usually food intolerances. It sure is in my case!

Electra Enthusiast
Electra
Posted
Hello,

So I'm very confused about this. I've been sick for as long as I can remember with various stomach issues. I've always been told it's just IBS, but it's increasingly gotten worse over the years. I went to a new gastroenterologist who did the blood tests for Celiac and they came back positive. So he had me do an endoscopy back in December. I started the gluten-free diet the day after, and have been on it since. I haven't really notices the IBS like symptoms getting any better (mostly diarrhea), but I have noticed that I haven't had any migraines (which I would get weekly), my face has cleared up, I'm sleeping better and I'm not having the night sweats like I used to.

So this weekend I finally got a call back from the Dr. with the results from the endoscopy and it's normal. No flattening of the villi or any damage. So he told me that doesn't necessarily mean anything, as it could be a false negative and that I should remain on the gluten-free diet for another 2 months and then go back again for blood tests.

I'm so confused! I have an appt with a nutritionist next week, she specializes in people with gluten intolerances/celiac. But I just don't know if I should stay on the diet or not. It's so frustrating since my IBS symptoms haven't gone away!

Thanks for letting me rant a bit. Anyone else go through this?

Jen

It seems to me that you have a very knowledgeable dr. From what I hear a lot of dr's will say you don't have celiac if your biopsy alone is negative, so when your dr. tells you it could be a false negative he/she is right and I would definitely stay on the diet. I know it's not fun, but you might only have to be on it for a bit longer and if it's determined that you don't have celiac then you know you did your best to feel better while you were waiting ;)

I also had a positive blood test and had been sent to the hospital a few times due to severe pain and "altheimers" like behavior, and since going gluten free most of the pain and altheimers symptoms have vanished. I still have the stool problems though, but from what I hear it has taken some people over a year to get their bowels straightened out!!

Good Luck and I hope you feel better soon!!

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NewB Newbie
NewB
Posted
Hello,

So I'm very confused about this. I've been sick for as long as I can remember with various stomach issues. I've always been told it's just IBS, but it's increasingly gotten worse over the years. I went to a new gastroenterologist who did the blood tests for Celiac and they came back positive. So he had me do an endoscopy back in December. I started the gluten-free diet the day after, and have been on it since. I haven't really notices the IBS like symptoms getting any better (mostly diarrhea), but I have noticed that I haven't had any migraines (which I would get weekly), my face has cleared up, I'm sleeping better and I'm not having the night sweats like I used to.

So this weekend I finally got a call back from the Dr. with the results from the endoscopy and it's normal. No flattening of the villi or any damage. So he told me that doesn't necessarily mean anything, as it could be a false negative and that I should remain on the gluten-free diet for another 2 months and then go back again for blood tests.

I'm so confused! I have an appt with a nutritionist next week, she specializes in people with gluten intolerances/celiac. But I just don't know if I should stay on the diet or not. It's so frustrating since my IBS symptoms haven't gone away!

Thanks for letting me rant a bit. Anyone else go through this?

Jen

NewB Newbie
NewB
Posted

The best advice is as everyone says: Stick with it...it took a while for me to just slightly improve with all the multiple symptoms and I sometimes wonder if I'll ever be completely normal again...but things got better...but now I am worrying about soy (since reading this forum). You have to be vigilant. Good luck!

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