Discussion Board

I am brand new to the McDougall Discussion Board.

Let me see if I can briefly introduce myself.
I received a diagnosis of IBS in college a few years back. My dr now says I have some kind of malabsorption issue, but a blood test said I don't have celiac so she is not willing to consider I might have a false negative blood test. I have chronically low calcium, iron, potassium, vit. D ect. Undigested food in my stools that float. Ect. I was not convinced.

My son has a number of developmental issues, neurological issues, mild epilepsy, GERD, failure to thrive, loose stool issues, aspergers type symptoms, apraxia, malabsorption issues ect.

My sister had horrible stomach aches daily. She decided to go gluten free at the same time we did a few months back. She is doing so much better. Her blood tests for celiac prior to going gluten free were negetive also. She was desperate and tried it anyway and it has helped her.

My son and I are gluten free, soy free, vegans for two months now. I think it is going well. I have a few oops moments where me may have had gluten accidentally. I am not sure, but I think I could relate feeling sick to the accidental intake of gluten. I think, but am not absolutely positive it is helping.
My son was sick in August and he went from 30 to 28 lbs. He is up to 32 lbs 2 months later. I think that is significant. He is 4 1/2 years old. His stools seem to be less frequent and I rarely see undigested food in them. But they are floating which they never did before. I thought floating stools means fat malabsorption and is a bad thing. I have a ton of questions.

What is the best way to get a diagnosis? What kind of doctor do we see? We had a GI specialist for my son and do not wish to ever see that doctor again!

Can a primary care physician order all the necessary tests?
Both of our blood tests previously came out negative.

I am doing fine cooking this way at home. Going out is hard. I question there are still foods that need to be removed, but can't figure out what ones. My son struggles with communication. I have to follow his body language, he his sensory processing disorder also causes him to miss read his feelings of pain. It is complicated to figure out what is really the cause of his issues.

So far I am on my own. No doctor to ask questions to. They do not agree with my gluten free testing time the last few months. But he has gained weight!

I really want an accurate diagnosis. Figuring out food intolerance's is a night mare. So hard. I am sure many of you can relate.

Hi,

I don't really know if I can help you. It certainly seems like you have had a lot of challenges. As far as I know, you can only get a firm diagnosis of Celiac if you are eating gluten. There is a genetic test that can be done. It doesn't diagnosis Celiac, but it can rule it out.

I kept a food diary for a long time. I would write down what I ate, when I ate it and how I felt throughout the day. It really helped me to identify possibly contaminated foods and other food sensitivities.

I don't think floating stool is a big problem. Gas, fibre and other things can cause stool to float. I would be more concerned with whether it was super loose or super compact, and how easy or difficult it is to move.

I went gluten free before seeing a doctor so I spoiled the chance for proper testing. But I did ask for the genetic testing and it turns out I do have one of the genes associated with Celiac and I continue to get better and better. I think the recovery can take a long time.

If you feel this is working for you, then stay the course and do as much research as you can. I think most people with Celiac diagnose themselves. All the other people with Celiac that I know have diagnosed themselves, me included.

Good luck and keep asking questions.

RRC

I also diagnosed a gluten sensitivity in myself. I continued to have a great deal of allergies and some skin issues even after being vegan for years. Eliminating gluten solved the problem. Since I only eat whole grains anyway it was a really simple transition. I just had to stop using barley and give up the instant vegan gravy mix and start making my own from scratch. I also switched to a wheat-free soy sauce. I got through the summer and am now into the fall (a troubled time with all the leaf mold) without so much as a sneeze - and I'd been an antihistamine junkie. As a bonus the pre-arthritis swelling in my knuckles receded and I can wear rings I haven't been able to get onto my fingers in years. I don't need expensive tests or a doctor. I just monitor how I feel - Great! I highly recommend the book: The Gluten Connection by Shari Lieberman.
Kate

The gold standard Celiac diagnosis is flattened villi. You have to eat gluten long enough to do enough damage to your intestines that the doctors can see it. If you're seeing improvement on a gluten-free diet, why go back? Slowly more doctors are recognizing non-celiac gluten sensitivity. I think the Celiac genes are dq2 and dq8, but I've read that many people with neurological symptoms that respond to a gf diet are dq1's. We went gf about 6 years ago when my son was suffering from chronic tummy aches and the doctor ran all kinds of tests and said he was "fine". More later - have to run!

Thank you for your advice. It was helpful.
I am looking at genetic testing. I am wondering is it better to go through a doctor or to order the test our self over the internet? What is cheaper? We have done genetic testing before and it was so expensive! What would the doctor need to write on the order script if we went to the doctor? I think we would need to tell our doctor specifically what we wanted and then pray he is willing to do it.

Sorry, I'm no help there, but I don't think most doctors will diagnose you as Celiac just with genetic testing...

Mahre.... for your son you will want to go to this web site

http://wogglebug.com/

This is a friend of mine she has a child with aspergers... and you can get hooked up with a community of people who treat their children with a gf casen free diet for their aspergers.
It is very very helpful

Sending hugs and hoping you see this
I will try to Pm you in a bit too.

Hi,

I recently saw a Gastro-Enterologist and she said based on my experiences both on and off a gluten-containing diet and the fact that I had one of the marker genes that it seemed likely I had Celiac (or at least a gluten intolerance). She didn't push me to do a gluten challenge and all the testing. She has left it up to me - no hurry. She also said most people diagnose themselves with Celiac.

I think if the positive genetic testing was influencial.

Thank you for your replies. I am interested in doing the genetic testing and realize it is not a positive indicator. Just an indicator that celiac could be possible. Now I am wondering what is the best way to get the genetic testing? I am not sure I have a doctor that would order the test right now. I am curious about if I order the test over the internet is it still reliable. Are the results as accurate?

I had expensive blood work done that came back negative for celiac. A year later, I did the saliva test for gluten sensitivity and it came back positive...a 15 was my score, and a 16 was celiac. I decided then and there I was too close not to pay attention.

When I break into some gluten, I end up with an inflammed leg rash--sometimes delayed for days before it shows. But ridding diet of gluten is a major health move. It's been worth it.

My doctor has celiacs disease so when I told him my symptoms he wanted to do the testing, he did an antibodies test and a dna test... Still waiting on the dna to rule out celiacs but the antibodies tests were negative... so he suspects now that I may get it later in life but we won't know for sure until the dna results are back... HOWEVER, the past couple weeks I have cut out the gluten and feel soooooo much better... My thinking is who cares what the test says- if you know it makes you feel that much better why on earth would you want to keep eating it?! JMO...

Also, I find my reaction to be especially bad if I eat gluten with dairy... I would just keep avoiding it if I was you...