I Really Need Help, Please!

[Joon]

I'll try to sum this up as succinctly as I can.

For five years I have suffered chronic common migraines and now that I'm on Topamax, which cuts down on the frequency, I still could never drive a car, because my l. eye's vision is double &/or blurry so much of the time.

The last couple of years I've lost a lot of weight, close to 40 pounds, without trying. I have been frequently bloated and the last few months, diarrhea was occuring 1 to 4 times a day, as well as intense pain in my stomach. All I wanted to do was sleep. I actually didn't notice the diarrhea right away (I had a bout last Nov. too) because I just attributed it to my nasty chronic, daily migraines.

My entire mother's family has celiac disease, save one brother out of five; even my maternal grandmother.

After not being able to stay awake and missing a lot of work, I essentially bullied a doctor at a walk-in clinic to get me an appt. with a gastroenterologist to test for celiac disease and in May this happened. I've now had a very full blood workup, a biopsy and a barium small bowel X-ray. All show I'm "fine," except for being being slightly in the red for malabsorption of B12 & Calcium. I now take those two vitamins plus a multivitamin.

Here's the weird news: I started a gluten-free diet after the biopsy (before the x-ray) and after five days my bloating disappeared completely. I stopped sleeping all the time. I cleaned my house finally and was able to have guests over for the first time in eons. I need you to realize how big a deal this is.

My specialist is convinced now that I don't have celiac disease, and asked me Monday to use a food diary to start adding gluten back into my life, except for wheat, because I must have a wheat allergy of some kind, he thinks.

Yesterday morning I ate organic oats. (Instant oatmeal, only half a portion.) After 1 hour 45 minutes I had intense stomach pain. After 7 hours I had enormous bloating, especially on the lower left side of my abdomen, below my bellybutton to my hip. Finally I had a huge amount of foul-smelling diarrhea (which I haven't had since going gluten-free) and after sleeping 13 hours straight, I felt much better.

I don't understand!! I thought oats would be the safest of all of my choices. I am intensely frustrated. First of all, isn't it a wacky coincidence that I should have a gluten sensitivity when my entire maternal side is Celiac? Second of all, why is my reaction so horrible to gluten when I am not Celiac? (Yet I could go down the line of my personal history and tell you about how I was born with no enamel on my baby teeth, tell you about my geographic tongue, etc. etc.)....

I am at the point now where I am worried my doctor thinks I am just an irritating female patient. But I do not want to lose my JOB. I have been through so much with the migraines. I am supposed to be thriving. I am in love. I want to be healthy!

I am so desperate. Please, please, please please help me.

[ShayFL]

You've had a positive response to the diet...and it just keeps getting better. My migraines disappeared when I cut the gluten 4 months ago. I dont have an official Dx. I DONT NEED ONE!!!

And oats have to be "Certified Gluten Free" or they are likely cross-contaminated. They use the same equipment and lines for oats and wheat.

Bob's Red Mill has "Certified gluten-free oats". Even still....some celiacs cannot tolerate oats as their protein is similar to gluten. It is individual.

Yes, you can still have celiac. Biopsy can miss spots of damage because the damage can be "patchy".

Have you had genetic testing? If Doc. wont do it, use Enterolab. See if you have Celiac genes.

But personally.....I would just stick with the gluten-free diet and watch your health improve.

[KristaleeJane]

Oats need to be gradually introduced into a gluten free diet after being gluten free for a few mths, and only a very small portion at a time to see if they cause symptoms. With me I have been gluten free for about 3 mths and I still cannot tolerate oats, I don't even bother anymore.

Just out of curosity you said you had a biopsy but what was your blood work results like?

Good luck

Krista

[Joon]

Oats need to be gradually introduced into a gluten free diet after being gluten free for a few mths, and only a very small portion at a time to see if they cause symptoms. With me I have been gluten free for about 3 mths and I still cannot tolerate oats, I don't even bother anymore.

Just out of curosity you said you had a biopsy but what was your blood work results like?

Good luck

Krista

My hemoglobin is remarkably good for my age (just turned 30) and gender (female). Everything was peaches 'n cream, except for the B12 & calcium I mentioned.

I can't believe I actually felt frustrated at how well my testing turned out. I'm just mystified.. you know?

Is it strange that the bloating was primarily lower-left part of my belly? Very deformed looking.

[*lee-lee*]

my doctor told me my blood looked good (well, of course except for the elevated antibodies that showed Celiac - she kind of mentioned that off handedly). my biopsy was negative but i've have a great response to the diet...and it's only been 3 weeks. nothing would make me go back on gluten. (i'm going for the genetic testing in a few days just because i have a burning desire to know if it's truly Celiac or just a "sensitivity" but regardless of the answer, i know gluten-free is the only way to feel better.)

do you know if the doctor ran a full Celiac panel? if you're going to a walk-in clinic, perhaps you onl y saw a PA and not a real doc?

either way, with a family history and positive response to the diet, you know what you have to do to regain your life back. keep reading this board...there's a ton of great info. good luck.

[Joon]

I had nine vials of blood taken, and had antibody tests taken, etc. He sees a lot of Celiacs and seems quite specialized.

I just talked to his secretary now and she passed on that I'm to have no more gluten, though I'm to keep up this food diary. I'm still considered "Not Celiac." I wonder if he'll be happy to keep me as "Mysteriously Gluten-Free Person For No Apparent Reason"? I don't know.

I am feeling a little discouraged as I see the crack and myself falling through it.

[celiacsista]

I have celiac disease and my 6 year old son is in the process of being tested. He just saw a fabulous dr who explained that the genetic testing is very imortant. If you don't have the genes, you can pretty much rule out celiac diease. The blood tests are not always accurate. With your family history it would be worth checking out.

But if you have tried gluten free and feel better, that is your body telling you what it doesn't want!

Oats are generally not tollerated. Try Quinnoa. It is tasty, can be prepared many ways and is gluten free.

Hope you feel better!

PS- your symptoms were exactly like mine.

[Joon]

Do I just ask for genetic testing? How do I go about doing this? My gastroenterologist seems so skeptical about me having celiac disease at this point. He thinks it must be some kind of allergy or general intolerance.

What is the test called?

Does having the gene mean for certain I would have celiac disease, or could it just mean I'm a carrier? --All of my maternal relatives have it except for one, so would genetic testing even be worthwhile for me? Couldn't I have the gene without having celiac disease?

Thanks very much.

I wanted to mention also that I had terrible muscle spasms in my legs and feet on my left side until going gluten-free and that has completely stopped. My specialist thinks nothing of this...

My eyesight (which is wonky, often, due to the chronic migraines--which have often improved so much now!) has been so much better many days since going gluten-free, too. When I told my specialist this, the look on his face was horrifying. I'm afraid to tell him anything else.