Is This Intolerance?

[hoopshype]

Hello guys,

I found this website online and I registered. With so many people suffering from intolerances I thought this could be of great help to me.

I have been suffering from various symptoms for the last 3 years and only now some have become increasingly unbearable.

I have done a CT of the brain (negative), thyroid and Hormones(negative), I've done heart EKG,ECHO, Stress test (Negative), I've done several Ultrasound viewings of my lower and upper abdomen (negative), I was positive for Gastric Acid and small Ulcers in the stomach. I've thousands of blood tests and everything turns out perfect. More than perfect, doctors say it could not be better. But I am still suffering and it seems no one understands me.

I also have a dislocated jaw which gives me great discomfort and nose deformation which doctors say gives me a chronic sore throat.

Let me start by listing my symptoms:

I have headaches very often, it feels like my brain is going to explode. These are not common headaches but tension headaches.

Dizziness and Confusion

Tongue Feels weird sometimes numb or cold.

Occasional ear noise or ache.

Face discomfort (made worse when in Sunlight)

Lymphatic nods enlarged

Occasional breathing difficulties

Numbness or tingling in feet or hands

Occasional chest pain

Now the fun part: All of these items come and go away at times... expect for the fatigue and weakness...

I'm almost certain that some food or group of foods is causing this. I have IBS, gasses and a weird faeces (kinda Oily). I'm rarely constipated or suffering from diarrhea, i rarely feel nauseous.

Any ideas?

[Lisa]

Have you had any allergy testing?

Oh...and welcome!

[hoopshype]

Have you had any allergy testing?

Oh...and welcome!

Thanks.

Yep I've had an allergy testing for 60 different things. Negative

[Chiana]

Have you had any allergy testing?

Oh...and welcome!

I second those statements! Though, in addition, did they check to see if it was an H. Pylori infection causing the ulcers? Also, have you had your b-12 levels checked?

[Marilyn R]

Numbness or tingling in feet or hands

Yes! There are neurological effects for 1/10th of the people who cannot tolerate gluten according to what I've read. I'm one of them, and I have permanent nerve damage (polyneuropathy) because I never associated my problems with gluten. (I changed soaps and shampoos all the time hoping to find the answer to all of that tingling.)

I'm not saying that you do or do not have an intolerance, I'm just sharing my experience. There are some vitamin deficiencies that can cause those sensations too.

Good luck to you, wish you the best.

[GlutenFreeManna]

Did you have a celiac bloodwork panel done?

I had mos tof those symptoms you listed except the jaw and nose thing...had constant sinus infection though and migrain headaches. You want to get all your bloodwork done before going gluten-free, otherwise you would have to go back to gluten later to test. The neurological symptoms do go away slower than the GI symptoms and many people with neuro symptoms are blood/biopsy test negative. So regardless of test results you should trial the diet for several months of strict gluten-free. Or you could do an elimination diet to start out and cut out all major allergens/any foods you suspect.

[hoopshype]

I second those statements! Though, in addition, did they check to see if it was an H. Pylori infection causing the ulcers? Also, have you had your b-12 levels checked?

I believe I've been checked for vitamins and minerals

[hoopshype]

Did you have a celiac bloodwork panel done?

I had mos tof those symptoms you listed except the jaw and nose thing...had constant sinus infection though and migrain headaches. You want to get all your bloodwork done before going gluten-free, otherwise you would have to go back to gluten later to test. The neurological symptoms do go away slower than the GI symptoms and many people with neuro symptoms are blood/biopsy test negative. So regardless of test results you should trial the diet for several months of strict gluten-free. Or you could do an elimination diet to start out and cut out all major allergens/any foods you suspect.

What are the bloodwork panels for intolerances? Including lactose, gluten, fructose and yeast I believe are the main ones? I live in a not so developed country and I doubt the availability of such tests. You guys have been through this and you know better than anyone about the tests needed.

[suziq0805]

Did you have a celiac bloodwork panel done?

I had mos tof those symptoms you listed except the jaw and nose thing...had constant sinus infection though and migrain headaches. You want to get all your bloodwork done before going gluten-free, otherwise you would have to go back to gluten later to test. The neurological symptoms do go away slower than the GI symptoms and many people with neuro symptoms are blood/biopsy test negative. So regardless of test results you should trial the diet for several months of strict gluten-free. Or you could do an elimination diet to start out and cut out all major allergens/any foods you suspect.

Not trying to steal the thread here....but you mentioned that people with neuro symptoms have negative bloodwork for celiac. Do you happen to have any info to back that up that I could take to my doctor with me? I've tested negative and do have the neuro symptoms.

[GlutenFreeManna]

What are the bloodwork panels for intolerances? Including lactose, gluten, fructose and yeast I believe are the main ones? I live in a not so developed country and I doubt the availability of such tests. You guys have been through this and you know better than anyone about the tests needed.

I don't know if there are ones for fructose, yeast or lactose. They do a breath test I beleive for lactose--but that is even hard to get in the US I think.

There is not reallya blood test for gltuen intolerence. There are test for Celiac. From what I understand-- currently if you don't test positve for celiac but you have a positive response to the diet you might be diagnosed as "gluten intolerant". Some people however have been able to get positive celiac diagnosis based on genetic testing and response to diet. This link lists the blood tests: Open Original Shared Link Take it with you to the dr to make sure you can get as many of the celiac panel tests as you can. Some drs will only do one but it is better to do them all to get a full picture of what is going on. Again these could all be negative and then you would try the diet and see if your symptoms go away.

[GlutenFreeManna]

Not trying to steal the thread here....but you mentioned that people with neuro symptoms have negative bloodwork for celiac. Do you happen to have any info to back that up that I could take to my doctor with me? I've tested negative and do have the neuro symptoms.

Sorry I don't have any links for you. I'm basing my staement on people's experiences I have read here. Perhaps someone else can giv eyou some research. Reasearch and testing is still in it's infancy, however compared to many other diseases. IMO, they will come up with a different way to test for neurological based celiac in the future and may even name it something else. Have you tried the diet to see if it helps your symptoms?