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cindyb1 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsI'm Hungry!The testing to determine if I have celiac is taking forever. I made the mistake of going off gluten last August, so any bloodwork has been negative but I am positive for the H.L.A. DQ2. The dr wants to do an endoscopy because any damage still may show up.
Anyway, I was doing okay avoiding gluten until eating some BBQ from a restaurant. The same day, I ate eggs from another restaurant that tasted powdered, not like a fresh egg. The following day, my stomach was really crampy and I had a headache and felt off.
This week I had dinner at a friends house. There were corn chips and a homemade dip that had no gluten. I ate that plus some BBQ chicken salad. Within an hour of eating, I got all hot and dizzy, felt like I was going to throw up. My stomach hasn't been right since and Im very tired. I never experienced the feeling of I'M GOING TO THROW UP RIGHT NOW.
It seems like my reactions to trace amounts of gluten are getting worse!
I am seriously afraid to eat anything. Im literally so hungry that my stomach is rumbling.
I guess my question is- do people grow more sensitive to gluten and get worse reactions? Does gluten make people throw up? Where in my meal was gluten hiding?
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- 613 views
cindyb1 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsReally Weird Symptoms Plus No Dx Yet, Where Do I Go From Here?Hello!
Its taking me forever to get a real diagnosis on whether I have celiac or non celiac gluten intolerance which is frustrating. I went to a top doctor here in Southern CA but her appointments are very hard to get, no one returns my messages and on my last appointment, she walked in with her keys in her hand, ready to leave quickly. She recommended a biopsy but it could be inconclusive because I have not been consuming gluten.
I did consent to the biopsy however, its been two weeks and no one is returning my call to schedule it.
Because Ive been off gluten since last July, except for cross contamination and accidental gluten consumption in things like sauces, gravies, going out to eat, etc the blood test was inconclusive.
She ran a gene test and I do have the H.L.A. DQ2 plus a whole host of celiac symptoms. She said this is not a clear diagnosis and Im in a "gray zone" of no official celiac diagnosis. I feel like a fraud saying I have celiac if I dont.
Since the "flip was switched" last March, I have a really odd symptom when I am sleeping, I suddenly feel like Ive been hit in the head and I wake up abruptly like someone has dropped a brick on my head. This feeling only began since I started being unable to tolerate gluten! Its scary. I actually passed out last year and spent a night in the ER after it happened the first time. It happens rarely but perhaps when Ive consumed trace amounts of gluten.
Lately I have also had bad heart palpitations. I had BBQ sauce from a restaurant last night and had bad heart burn, heart palpitations and woke up with a terrible headache along with the brick dropping on my head sensation.
I also ate breakfast out and even though I told the waitress I was gluten free, I believe the eggs were powdered because they had a weird consistency!
Like many of you have felt, I'm very frustrated and unsure of what's wrong with me. My body does have an achy feeling to it which I attributed to exercising but now I dont know. Im frequently fatigued too.
I thought the doctor would've given me literature or sent to me a nutritionist to help cure my gut or recommended some supplements to help with the damage the gluten has done but NOTHING. Not even a single brochure. Since gluten hides in countless foods, I would have also thought she'd thoroughly go thru that with me but NOPE.
I really don't know where to go from here. Advice? thoughts? Anyone else experience that weird feeling or heart palps? (in addition to the digestive distress) Has anyone had great luck with a good doctor?
- 2 replies
- 660 views
cindyb1 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsPositive Genetic Test Plus Symptoms- Does That Equal Celiac?Hello,
My doctor ran a genetic blood panel and has been so busy that I can't see her until next week. I received a message today that the results are in and I DO carry the gene for celiac.
Knowing that I carry the gene, coupled with the fact I've had all major (and minor) symptoms of celiac including that pesky rash, am I safe to think I probably have it?
I havent been eating gluten since August, although have been consistently cross contaminating myself and accidentally consuming gluten in things I didnt even realize contained gluten. The blood tests for the IgA etc. were negative, the endoscopy may not show any damage since I havent actively been eating gluten.
What would you do if you were me? Just figure I probably have it and keep living my life gluten-free, or have an endoscopy?
Thanks for any input, advice and thoughts.
- 3 replies
- 628 views
cindyb1 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsGenetic Test For Celiac, How To Interpret Results?Not quite sure how to interpret these results? Any help would be very much appreciated. The doctor wants to see me in her office on Monday so I don't know whether to be worried or not!
HLA-DQB1 *02:01 NOT PRESENT HLA-DQB1 *02:02 PRESENT HLA-DQA1 *02:01 PRESENT HLA-DQA1 *05:01 NOT PRESENT HLA-DQA1 *05:05 NOT PRESENT HLA-DQB1 *03:02(8) NOT PRESENT HLA-DQA1 *03:XX NOT PRESENT
I've been trying to google the results but I am getting so confused! Thank you in advance!
- 15 replies
- 1,482 views
cindyb1 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsDoes It Sound Like Celiac Or Could It Be A Gluten Intolerance?Im waiting to get into the Celiac/Gasto specialist but the waiting is giving me anxiety!
Long story short- Ive always had stomach issues. I thought I had IBS because the cramping, bloating and constipation was horrible. Ive also been extremely fatigued and sometimes cant get through the day without laying down. I have Interstitial Cystitis too which flares up occasionally.
I went through a stressful year and since then, my stomach aches were worse. Id get stomach cramps and pains that were terrible. I stopped eating gluten to see if the pain would go away and it seemed to help.
My question is this - my reaction to gluten has gotten worse and worse. Now the tiniest bit of gluten makes me very sick. If I accidentally have so much as a crumb of it, I get ill.
For example, I ate french fries from Carls Jr and got sick, I only had four! I later learned they fry their breaded items in the same oil as the fries. Or I touched dog food and got sick. I ate soup where my daughter had dipped her bread into her soup and got really sick.
My husband thinks Im crazy and this is all in my head which makes this all so much worse.
So if I had a gluten intolerance, would I be reacting in such a serious way?
- 4 replies
- 709 views