Stuck In A Rut

[passionfruit877]

Hi.

I've been on here before asking questions about wheat allergy and gluten intolerance. I stumbled on gluten intolerance a few months ago, and though my doctor said I could possible have it, he said he did not believe I had Celiac. Up until then I was told I had IBS (though nothing they gave me for that helped really). I tried a gluten free diet just to test it out and felt better on it. After a while I also had to cut out dairy though, because I began to realize the milk I was drinking made me really bloated.

After 2 months or so off gluten I began to notice when I accidentally ate it I was getting really bad reactions, like bloating, stomach cramps,and a tightness in my chest. I threw up twice from dairy. I was referred out to an allergist.

I reacted badly to the skin prick test, I guess because I have sensitive skin, so they did a blood test, and found only a very mild allergy to eggs (no wheat or milk), which they told me would not cause stomach cramps. I talked to the allergist today, and he said he could not test me for gluten intolerance. I got sick for two days this week after eating at Golden Corral. I guess I'm just disappointed because I wanted someone to tell me exactly what I shouldn't be eating.

What should I do now? I feel like my main doctor cares, but doesn't think my food problems are as bad as I do, and just "lets" me eat gluten free. What do you do when people just have no answers for you?

[Wolicki]

  On 1/22/2010 at 8:30 PM, passionfruit877 said:

Hi.

I've been on here before asking questions about wheat allergy and gluten intolerance. I stumbled on gluten intolerance a few months ago, and though my doctor said I could possible have it, he said he did not believe I had Celiac. Up until then I was told I had IBS (though nothing they gave me for that helped really). I tried a gluten free diet just to test it out and felt better on it. After a while I also had to cut out dairy though, because I began to realize the milk I was drinking made me really bloated.

After 2 months or so off gluten I began to notice when I accidentally ate it I was getting really bad reactions, like bloating, stomach cramps,and a tightness in my chest. I threw up twice from dairy. I was referred out to an allergist.

I reacted badly to the skin prick test, I guess because I have sensitive skin, so they did a blood test, and found only a very mild allergy to eggs (no wheat or milk), which they told me would not cause stomach cramps. I talked to the allergist today, and he said he could not test me for gluten intolerance. I got sick for two days this week after eating at Golden Corral. I guess I'm just disappointed because I wanted someone to tell me exactly what I shouldn't be eating.

What should I do now? I feel like my main doctor cares, but doesn't think my food problems are as bad as I do, and just "lets" me eat gluten free. What do you do when people just have no answers for you?

You need to go on a completley gluten free diet and probably have to give up dairy, too for a while. Cross contamination is a big problem, so it's best not to eat at restaurants until you've got it completly nailed, and that takes a while.

[passionfruit877]

Thanks Wolicki. I am back on my gluten free diet, and have been for about 3 days now. I feel great. Gluten makes me feel like I have a cold or something, my whole body is pretty much affected.

My complaint though, is that I have not been diagnosed with anything (except IBS). Do I just assume I am gluten intolerant and move on? I guess I was just expecting a doctor to tell me thats whats wrong with me. My allergist said he couldn't test me for gluten intolerance, and my main doctor (who I didn't tell I was seeing an allergist, but no one was really helping me find anything out) just says if it makes you sick don't eat it pretty much.

When I got referred out to see an allergist to make sure my gluten intolerance wasn't a wheat allergy, the woman I spoke to asked me, "Well how do you know you're gluten intolerant?" Um...it makes me sick? I don't want to be known as the crazy girl who thinks she can't eat anything.

[Jestgar]

  On 1/23/2010 at 4:37 PM, passionfruit877 said:

if it makes you sick don't eat it

I'd go with that.

When I eat a peach my throat swells shut. I know this and I don't need to eat a peach in front of an MD to be convinced that peaches are bad for me.

Just because what you eat doesn't kill you immediately doesn't mean you can't be the one to decide you shouldn't eat it.

[passionfruit877]

Thanks Jestgar. I understand what you mean. I know my body better than my doctor and I know what makes you sick. I feel bad for you with the peaches though! I would miss my daily peach yogurt and gluten free bread with peach preserves.

I suppose those closest to me understand whats going on and that should be good enough for me. Although, while I'm asking questions, is anyone every actually diagnosed with gluten intolerance? Or are people just diagnosed with Celiac? From what I understand, Celiac is later stages of gluten intolerance if gluten is not taken out of the diet (correct me if I'm wrong)? Like I said, my doctor did not think I have Celiac, though I do have some of the symptoms, and basically told me the only way to fix it was to be off gluten, which I already was. Perhaps that is why he didn't really consider it. I think for now I will stick to being gluten free because I know I am better off not eating.

[Wolicki]

The challenge is that there is very little difference between Celiac and gluten intolerance, as far as symptoms go. Doctors like "concrete" and this is not a concrete problem.

I supposed you could keep going to doctors trying to get a concrete answer, but many of us have done that, and not gotten anything but frustrated. If you feel better off gluten, you should stay that way. YOU know what is wrong, and you have control over it. Does it really matter what a doctor would say? I think not.

Know that there are thousands of people here who have been through the same thing, and we are all willing to help you. Be well.

Janie

[gf-soph]

I have been pretty much diagnosed as gluten intolerant, in that my Dr was the one to tell me to go gluten free if I ever wanted to get better! I had gluten antibodies several times higher than the normal range, severe D and malabsorption, as well as a clear early response to the gluten free diet.

She often refers to me as celiac in referral letters, though we both understand the difference, it means that others treat my medical need to be gluten free seriously. A lot of doctors seem to be behind in their understanding of celiac, let alone non-celiac gluten intolerance. At least it sounds like your dr isn't dismissive about your gluten problems- a gastroenterologist I saw years ago told me not to even try giving up gluten as there was no way it was my problem. I believed it for over a year!

I am a member of the celiac society (in NSW, Australia), they require either a diagnosis of celiac or a Dr's letter stating that you need to be gluten free for medical reasons.

There are many different schools of thought about the relationship between celiac and gluten intolerance, you can find some posts about it here. There doesn't seem to be much doubt that non-celiac gluten intolerance can make you extremely ill indeed, so it should be taken seriously.

I think part of wanting a diagnosis of celiac is that it means they have seen the damage to your villi and it makes it definite. Without that diagnosis is it easier to doubt that gluten is the problem. The best way to know is test it out, as you are doing.

It's true that when you are off gluten it can cause false positives in tests, though it can take a while for blood antibodies to go down. They require you to eat a lot of gluten for weeks or months to do these tests, and a lot of people don't want to go through that if possible!

If you aren't already it's a good idea to keep a food diary (with symptoms too), as it is a great way to see for yourself (and possibly your doctor) the improvements on the diet. I stopped getting foot cramps and mouth ulcers within the first week or two, and other more important things reduced slowly after that. It could also help if you have food-related problems down the track, a good dietician can find out so much from a food diary.

Best of luck,

Sophie