To Eat Gluten....or Not...

[jencs]

I posted a while ago after I had my blood tests done, which came back negative. I went to the gastroenterologist this morning and didn't get any real answers. She asked why my PCP had suggested me going gluten free, and why not trying something else. I said she thought maybe my stomach issues (diarrhea, bloating, pain) were from a food intolerance or allergy and suggested cutting out breads, wheat, etc. I also told her that I have family members with Celiac. She said, well your blood work, "which is very accurate" shows that you do not have Celiac so let's clear that up right now. So with that statement I didn't even want to get into it with her that I have heard there are false negatives, what about genetic indicators, etc.

I have now been gluten free for 4 weeks. I still have some diarrhea issues, but primarily after eating salads. The biggest change I have noticed is the reduction of bloating and my upper abdomen is no longer as sensitive to the touch. There were times where if my kids climbed on me it hurt. I don't have that anymore. I told the doctor this and she did say that if I think being gluten free is helping, stick with it but "its a really hard diet if you don't have to do it." Yes, I know. She also suggested a probiotic, which I I know some of you on here take as well. So I am happy to try that as well.

So what do I do now? I feel like if the bloating and stomach pain are much better, and bathroom issues are reduced, I should stick with the gluten free....but it is difficult. Is it worth it to try going back to gluten again, but try the probiotic to see if that matters? Or stick with my gut and knowing this is making a difference? It is so hard without a diagnosis...and do you find it is hard to stick to the diet? Did you have slipups that made you realize you are doing the right thing?

Thanks....

[kpryan]

If I were you, I would see a different gastro.

I've been gluten free for about 2.5 years without a diagnosis. I had the return of bloating and the same symptoms you mention so I am just now going to a gastro who I really like. He's going to do an endoscopy and blood work after I've been back on gluten for 1 month. It's not been fun but I'm hoping to have some answers at the end of this.

But since you are at the beginning of your journey I would find a doc that you like and that will work with you. Rule out anything else (bloating can be a symptom of other issues...some serious) and then take it from there....

I posted a while ago after I had my blood tests done, which came back negative. I went to the gastroenterologist this morning and didn't get any real answers. She asked why my PCP had suggested me going gluten free, and why not trying something else. I said she thought maybe my stomach issues (diarrhea, bloating, pain) were from a food intolerance or allergy and suggested cutting out breads, wheat, etc. I also told her that I have family members with Celiac. She said, well your blood work, "which is very accurate" shows that you do not have Celiac so let's clear that up right now. So with that statement I didn't even want to get into it with her that I have heard there are false negatives, what about genetic indicators, etc.

I have now been gluten free for 4 weeks. I still have some diarrhea issues, but primarily after eating salads. The biggest change I have noticed is the reduction of bloating and my upper abdomen is no longer as sensitive to the touch. There were times where if my kids climbed on me it hurt. I don't have that anymore. I told the doctor this and she did say that if I think being gluten free is helping, stick with it but "its a really hard diet if you don't have to do it." Yes, I know. She also suggested a probiotic, which I I know some of you on here take as well. So I am happy to try that as well.

So what do I do now? I feel like if the bloating and stomach pain are much better, and bathroom issues are reduced, I should stick with the gluten free....but it is difficult. Is it worth it to try going back to gluten again, but try the probiotic to see if that matters? Or stick with my gut and knowing this is making a difference? It is so hard without a diagnosis...and do you find it is hard to stick to the diet? Did you have slipups that made you realize you are doing the right thing?

Thanks....

[txplowgirl]

For some of us dairy and soy will cause bloating and diareah not just the gluten. I have cheated 1 time and have been accidently glutened about 3 times. I do not want to eat gluten at all. I as well as others here think and refer to it as rat poison. With all the cancers and auto immune diseases in my family that is enough incentive for me to stay gluten free. It gets easier as time goes along.

But the longer you continue to eat gluten the longer you will be sick.

I hope you get to felling better.

Vicky

[mushroom]

Most of us who take probiotics do so to heal the damage that gluten has done to our gut. I never knowingly consume gluten - once I got some from a food I ate, the only other times have been from prescribed medications. If not eating gluten makes you feel better, that is the strongest indication I can think of for not doing it. The degree of difficulty in eating gluten free is exaggerated by those who would not think of doing it themselves. It can be inconvenient at times, but it is not hard. It does, however, require more preparation of foods from scratch.

[jencs]

Most of us who take probiotics do so to heal the damage that gluten has done to our gut. I never knowingly consume gluten - once I got some from a food I ate, the only other times have been from prescribed medications. If not eating gluten makes you feel better, that is the strongest indication I can think of for not doing it. The degree of difficulty in eating gluten free is exaggerated by those who would not think of doing it themselves. It can be inconvenient at times, but it is not hard. It does, however, require more preparation of foods from scratch.

Thanks for the feedback everyone. Mushroom, I actually agree about the degree of difficulty.....it's more about preparation. And having the right foods in the house to eat, as long as I make sure I've done my shopping I really don't have much problem at all. And while it's only been 4 weeks, it has been easier than I thought it would be.

I agree with finding a different gastro, I read the thread on the Doctors section about "when to find a new doctor" and while I know it is supposed to be slightly humorous, the doctor I saw yesterday said half of the things there. I found a webpage for a Celiac Group in my area and I thought I might email them to get a recommended doctor. I also spoke to my uncle has night who has undiagnosed Celiac (his blood levels were elevated, but not conclustive and never went as far as the endoscopy) but his manifests as DH. He said he breaks out in a rash about 45 minutes after eating gluten, so for him he doesn't need the official diagnosis, he knows what it is. He did say it took at 16 months for him and the doctors to figure it out though. His daughter (my cousin) also has it, and has the digestive issues and was given negative results 3 times before a second endoscopy showed she ahd it. She is finally getting better, gaining weight (she was only 90 lbs and is now up to 98 in a year) so it is definitely working for her. He said she still does have issues though and finds eating organic veggies has made a big difference for her as well.

I talked to my husband about it, and he agrees that if it is making me feel better to stick with it. I did pick up a probiotic yesterday and started that but plan to stay gluten free. And when possible, stay away from lettuce since that seems to be a trigger for me.

[Skylark]

You are correct in writing off that doctor. If there is celiac in your family, you have a positive "genetic test". It's been published repeatedly that HLA-DQ is not the whole story with celiac disease. The test just means that in the absence of any relatives with celiac you would be at low risk, not that you can't have celiac.

Have a look at some info on fructose malabsorptin, especially if fruits bother you as well as salad. There is fructose in vegetables and in a lot of dressings. The fructans in wheat give people with fructose malabsorption trouble. This is some info on a low FODMAP diet you might look at.

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[jencs]

You are correct in writing off that doctor. If there is celiac in your family, you have a positive "genetic test". It's been published repeatedly that HLA-DQ is not the whole story with celiac disease. The test just means that in the absence of any relatives with celiac you would be at low risk, not that you can't have celiac.

Have a look at some info on fructose malabsorptin, especially if fruits bother you as well as salad. There is fructose in vegetables and in a lot of dressings. The fructans in wheat give people with fructose malabsorption trouble. This is some info on a low FODMAP diet you might look at.

Open Original Shared Link

Thanks Skylark, I was actually reading about fructose malabsorption on another thread. I will take a look at it.

As far as the genetics go, they didn't even test me for that. But on my maternal side, so far we know my uncle, cousin, and my mother's cousin and her granddaughter all have it. I would think that would be enough people in one family tree to indicate it being a possibility. My mother also has digestive issues, but it has never been resolved. They have thought IBS, but I don't think she's ever tried cutting out gluten to see if it made it better. Maybe she will if I tell her it works for me.