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Been Told I Just Have "gluten Intolerance"

Melstar23

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Melstar23 Apprentice
Melstar23
Posted

This year I started getting pain on my left side. It came in waves, but increasingly got worse. Doctor first said it was just gastro, when I still had it for 2 months, he had me tested and scanned for problems with my kidney, bladder, ovaries and every test came back negative. He basically said that he had no idea, I wasn't a serious case because the only symptom I had was pain and he referred me to the GI specialist at the hospital which was a 3 month wait. I was in so much pain everyday, I had to try something, so I tried cutting out dairy for a week and had no difference, next I tried cutting out gluten and the pain started easing off and was gone after 1 1/2 weeks. I kept off gluten for another 1 1/2 weeks and the pain was gone, so I went back on gluten and the pain came back that day. I ate gluten for 3 days with pain everyday, so I went back to gluten free and the pain was gone in 2 days. I was gluten free for another 3 weeks and enjoying being pain free, then I went back to my Dr and told him what had happened. He told me to eat gluten for 10days, then come back for celiac panel test, celiac genetic test, and iron test. My genetic test came back positive to the celiac gene, I had extremely low iron levels (I'm not vegetarian), but I was told that my celiac panel test came back with a result of less than 10. He said that because my celiac panel test is less than 10, I only have a 10% chance of having celiac disease and I will just have gluten intolerance. He has told me to stay gluten free, but it won't matter if I have gluten occasionally (I'll just have a bit of pain, but no damage). He now has told me to take iron tablets for 2 months, then have another iron test. He says that if my iron levels improve then I definitely don't have celiac. He has also moved my GI appointment to January as he says that it is really important that I have this iron test result before I go. I'm confused about the results, I wonder if 10days is really enough time to have a result on a celiac panel and I don't know if I'm doing the right thing cutting out gluten and taking iron. By the time I go to the GI specialist, I will be gluten free for 3 1/2months. Will that mean that if I had an endoscope, my result would be negative even if I do have celiac?

Does anyone know if it correct that I only have 10% chance of having celiac, based on what I've been told? Should I be treating it as gluten intolerance, avoid gluten most of the time, but not worry if I have gluten occasionally?

The other thing that annoyed me was that he gave me a print out about gluten intolerance which said that gluten intolerance is often a psychological disorder regarding wanting to control food, rather than a physical health problem which is celiac disease.

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reddgreen Newbie
reddgreen
Posted

Hi Melstar,

Wow, your story sounds great in that you found out that eliminating gluten got rid of most of your symptoms. Im really, really sad to read:

"The other thing that annoyed me was that he gave me a print out about gluten intolerance which said that gluten intolerance is often a psychological disorder regarding wanting to control food, rather than a physical health problem which is celiac disease."

which is almost absurd!

My background is math and statistics, so Im not at all surprised that some doctors see a negative result in a weak test (a test that does produce a large number of false negatives), and tell you that you're not celiac or allergic to gluten.

Ive been suffering for decades, and the past 10 years have gotten steadily worse. Ive been through many CT scans, which I now believe were completely useless. And not a single one of my GI doctors even mentioned the possibility of Coeliac or gluten allergies.

I live on sandwiches, eat a muffin or toast, etc., most are loaded with gluten.I just found this blog today, and actually never heard about coeliac or such symptoms as mine being related to gluten intake. Im going to call my GI doctor tomorrow and push hard for a gluten/coeliac test, and hope to get to the bottom of this after many miserable years.

Best luck to you, I hope you're on the road to permanent good health. Please post your status again when you get a chance.

Regards,

Mike

shopgirl Contributor
shopgirl
Posted

When did doctors collectively decide that most of their patients' symptoms were in their heads or psychologically motivated? I spent months going to different doctors this year who kept insisting my problems were due to stress, anxiety, depression, etc. until one of them finally did a Celiac test. Guess what? It wasn't in my head and I've read the same thing here over and over again.

Is this in the last ten years? Twenty years? I get that stress can do a lot to the body but when did it become so en vogue for that to be the number one diagnosis offered?

shopgirl Contributor
shopgirl
Posted

And sorry to hijack your thread, Melstar, but yes, if you were gluten free for three and a half months, chances are pretty strong that your endoscopy would be negative. My GI doc didn't let me go gluten-free for one week because she didn't want a false negative.

If you want a more accurate test for Celiac, you'll have to challenge gluten, eating a good amount of it everyday for at least a few weeks before you do the endoscopy. The other option is to just go gluten free and see if you get a positive dietary reaction. But even if you're non-Celiac gluten intolerant, you can't just avoid gluten most of the time, you need to cut it out entirely to see results. "Gluten free" really does mean gluten free.

cassP Contributor
cassP
Posted

He now has told me to take iron tablets for 2 months, then have another iron test. He says that if my iron levels improve then I definitely don't have celiac.

this statement he made doesnt make any sense... celiac & gluten intolerance doesnt work exactly the same in every case. you could be absorbing iron and still have celiac or gluten intolerance... yes- many celiacs stop absorbing nutrients, and losing weight, and become deficient in B12, D, or Iron... but that's hardly a way to dx a disease or not.

OY... so much wrong with everything your doc has said. but in their defense, they really dont learn about Celiac & Gluten Intolerance.. there's no money to be made off it.

and in regards to how you view "just" gluten intolerance... i know its tempting.. ive been there before- but gluten intolerance can be just as bad and sometimes worse than celiac. if you have gluten intolerance- your body may be making antibodies to attack the gluten and cause all sorts of inflammation thruout your body... this can lead to crohns & heart disease, etc.. also, if you really research online- you'll see so much information out there about gluten triggering & aggravating lupus, RA, MS, autism, Hashimoto's thyroiditis, etc, etc...

and these "ranges" are a bit misleading.... so what if you're a 10... what sort of magic happens to bring you to 11.. or to make an 11 or 12 any more serious than a "10"

sorry, ill take a break now.... good luck, and hope you get healthy soon :)

Cypressmyst Explorer
Cypressmyst
Posted

The other thing that annoyed me was that he gave me a print out about gluten intolerance which said that gluten intolerance is often a psychological disorder regarding wanting to control food, rather than a physical health problem which is celiac disease.

*Spits out water*

What?!?!!?

Please scan this abomination in for the rest of us to read. Gluten Intolerance is a psychological disorder regarding wanting to control food...

So it isn't enough that we have to suffer living in a gluten filled world but now they want to paint us as crazy too?

:angry:

What an insult.

nora-n Rookie
nora-n
Posted

My iron (ferritin) levels went up to 100 after giong gluten free, what is the doctor talking about??

It is not easy to get a diagnosis after haveing been off gluten.

I am in europe, and here we usually go back on gluten to get the diagnosis. You have DQ2 or DQ8 and it is probable you will have a positive biopsy if you go badk on gluten before the biopsy.

the latest recommendations I read, is to eat at least 0,5 grams of gluten per kg weight, and that is a lot. Here it is half a loaf of bread a day when I weigh the bread and do the math. Your bread might differ.

There are some forums out there for gluten intolerant people, and they are even more gluten sensitive than ordinary celiacs, and have neurological symptoms as well. But often they are DQ1 and do not get the celaic diagnosis.

DH patients are not always DQ2 or 8 either.

I find it really objectioal that a doctor says gluten intolerant people have a food contro issue.

There are a lot fo doctors out there that research gltuen intolerance, and are trying to learn more about it. It is much more widespread than celiac. Often their antigliadin IgG antibodies are positive, but doctors dismiss them. google ford gluten.

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