KMMO320

Sandra,

Up until this morning, all of my drs told me that gluten was not my problem..well ok I did have 2 tell me it was possibly gluten intolerance but the other 2 told me absolutley it was NOT Gluten.

So I kept eating bread. I kept eating donuts and cake. When people said to me "I thought you couldnt have it" I would just say, I can have whatever I want!

In my head, if it wasn't going to kill me, then I could deal with it. To me, without a "diagnosis" and without people believing that it was gluten, then I would just keep eating it and believe that it was something else.

I also just rationalized, its ok, I will eat this donut and be really sick but it usually passes in about 2-3 hours so I will lay down.

REALLY! Thats what I told myself..eat what you want and then lay down until it passes! Because unlike other people, my symptoms do pass in a few hours but it SUCKS while it is happening!!

Gluten intolerance is a real thing. Its a problem. Doesnt matter if a Dr "diagnoses" you or not, its there.

This morning, my dr finally diagnosed me as Celiac, believing that I am at the very early stages. After researching, she NOW believes that gluten intolerance is the beginning stages of full blown Celiac Disease, so she just cut to the chase and said to start living a gluten-free lifestyle now to head it off...
I don't know if it's true, and I think many many many Drs dont really know...yet. But if you feel better when you DONT eat bread/pasta then DO NOT EAT IT!

I had the reverse happen..I keep gaining weight. uncontrollably, it seems. I gained 30 pounds in a month and a half. I went off glute for 3 weeks and lost 6pounds. I started eating gluten and gained 10 pounds..in TWO WEEKS! its crazy how your body reacts, some people lose...some people gain. its CRAZY!

but I say...please stop eating it. It doesn't love you .

You sound so much like me. I dealt with my stomach/digestive issues for 18 years. It just became normal for me to know where the bathrooms are everywhere I go. It became normal for me NOT to eat at friends and family's houses because I knew I would end up in their bathroom with people waiting to use it, and having to go in after me (embarassing!). It just became routine. A GI 13 years ago told me, IBS and turned me loose. I tried elinating greasy foods, dairy and eggs but even if I had a single cracker,or a few spoonfuls of canned soup,  it would send me to the bathroom minutes later.

I went to my Primary for routine blood work (hypothyroidism) and my vitamin levels were low (Iron, B12 and D). That, my rapid weight gain, 30lbs in 2 months,and my list of other complaints, mostly fatigue,migraines, brain fog, chronic sinus infections, made her send me to a GI.

THAT GI did an Endoscopy and ran blood work and a Celiac gene panel and when everything came back Negative, she handed me soem vitamins and said she would see me in 3 months. I said what is wrong with me then, and she said IBS...even though I had a host of other problems. She never thought I had celiac or gluten problems in the first place so she wasnt really looking. I am IGA deficient and she ran only IGA based tests.

be that as it may, I may not have Celiac Disease and thats GREAT, but gluten is DEFINITELY my problem. After she did her tests, I had 3 weeks until I had a follow up with her, so I went gluten-free and FELT FREAKING AMAZING!!!! I slept well, I could breathe out of my nose, I had NORMAL BOWEL MOVEMENTS!! I could eat and then go shopping and not have to leave my carriage somewhere to run for the bathroom. Such a small thing most people take for granted but for me thats amazing!! I was in awe of my body. my headaches went away, I had energy. I woke up feeling ready to face the day.

So after my GI told me it was nothing..I told her how I felt and she said, still..there is no medical evidence to suggest you go gluten-free and I dont reccomend it, its hard and expensive to maintain. And that was that.

At first I was just going to go without a dr and just gp gluten-free but I couldnt let it go. So I made an appointment with the Celiac Center in Boston and they admitted that it sounded like I was Gluten Intolerant and possibly have a wheat allergy and suggested I go gluten-free ASAP. It was expensive and time consuming but they validated what I knew.

Bottom line is you dont need a Dr to tell you to go gluten-free, if it makes you feel better, then there is your answer. As there is no treatment for it anyway aside from going gluten-free, it cant hurt.

For 3 weeks you have been gluten-free & you re-did the blood work for celiac. I hate to say it but there's every chance it will be neg also b/c you were gluten-free for 3 weeks.

Thats what I asked my dr too...and she said oh no, it will be fine.

Whatever. I decided I am done. I will just do what I know works from now on.

It's not happening out of nowhere. You said yourself :

"The stomach thing has been going on for years"


You have now progressed to the next stage where it has done so much damage to the intestines & is now doing damage to other parts of your body. And even that has been in progress --- it's just deteriorated to the point that you FEEL it now.

I suppose you are right. I do want to thank everyone on the boards for dealing with my whining and ranting. This is very new to me. Though not the worst thing that can happen, and certainly not the end of the world, I always assumed food allergies and such were things that happened to OTHER people, and not me. lol.
So its all very surreal right now. I think its going to take a while to process.

I work in a teeny restaurant and I have to admit, it is VERY hard to accomodate food allergies. I bring my own food to work unless I feel like ordering a plain salad. For Celiacs, there really isnt anything I would reccomend. Our cooking surfaces are SO SMALL that in order to serve them safely, the cook would have to ONLY be cooking for that table. He wouldn't have room to grill a plain steak and regular food for another table..it would really bog down the whole kitchen..so unless we are really slow, there isnt much we can do, and I say that as someone who has this problem.