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Not Celiac


Gerri

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Gerri Explorer

I suspected that I would not be diagnosed with celiac. The Gastro doctor said likely just Gluten Intolerant, and to stay away from glutten if it makes me feel better.

She confirmed Acid Reflux with inflammation, which she seen on the way through with the scope. Acid reflux I've had for over 30 years.

She said I have an Hiatus Hernia. (this is new)

She confirmed I have Irritable bowel Syndrome, which I have already been diagnosed with, 30 years ago.

She said the major bloating is from my diabetis (which is supposedly not controlled), which no doctor is putting me on medicine for. This I do not believe.

Hugs

Gerri


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nora-n Rookie

Wwhat other tests did you have, and how many biopsies, and what d the report say, and what are your symptoms, and are you still on gluten?

nora

ravenwoodglass Mentor
I suspected that I would not be diagnosed with celiac. The Gastro doctor said likely just Gluten Intolerant, and to stay away from glutten if it makes me feel better.

She confirmed Acid Reflux with inflammation, which she seen on the way through with the scope. Acid reflux I've had for over 30 years.

She said I have an Hiatus Hernia. (this is new)

She confirmed I have Irritable bowel Syndrome, which I have already been diagnosed with, 30 years ago.

She said the major bloating is from my diabetis (which is supposedly not controlled), which no doctor is putting me on medicine for. This I do not believe.

Hugs

Gerri

After all the hell you went through it must be frustrating to hear a report like the one she gave you. As sick as you were from the challenge it does not surprise me that she found a new hernia, gluten reactions can be really forceful. Hopefully now that you are through with them torturing you healing can begin.

Gerri Explorer
Wwhat other tests did you have, and how many biopsies, and what d the report say, and what are your symptoms, and are you still on gluten?

nora

The GASTRO took 3 biopsies I believe. She didn't give me a copy of the report. She pretty much brushed me off, and told me to loose weight. I had to get her to go over her report to find out about the hernia, and my inflamed esophogus. (Oh, she did say I had GERDs, and IBS again.)

I lost 10 lbs right after going off gluten, and haven't loss any since. I eat like a bird, definitely not hungry.

Definitely not on gluten. I having more Lupus like symptoms. The criteria for Lupus, to be diagnosed with lupus is 4 out of 11, and I have 10. My doctor won't diagnose me with Lupus unless my ANA is positive, and as of 4 years ago it was negative.

My friend tends to think, I have adrenal gland fatigue, which is causing thyroid problems. My family doctor says NO!!!

I off gluten indefinitely now, GASTRO said it will help with the IBS :)

Hugs

Gerri

Gerri Explorer
After all the hell you went through it must be frustrating to hear a report like the one she gave you. As sick as you were from the challenge it does not surprise me that she found a new hernia, gluten reactions can be really forceful. Hopefully now that you are through with them torturing you healing can begin.

Hi

If I am indeed not Celiac, then the hell I went through was because of severe increase in my allergy to sulfites, which is in all gluten products. When I increased the gluten bread, pasta, and most baked gluten products, I increased the sulfites. I have had anaphalatic shock from sulfites. When I stopped the gluten, I also decreased the sulfites, and loss ten lbs.

The GASTRO, believed I was only gluten intolerant, also said that by staying on the gluten diet it will help with the IBS. The GASTRO, wants me to lose so much more weight. My friend thinks I have Thyroid problems. She bets her life on it. If I have Thyroid problems, which my doctor won't check out, it might be the reason why I can't lose weight.

The Lupus symptoms I am dealing with has increased dramatically. It seems my allergies to sulfa, sulfates, sulfites, sulfur and derivitives continues to increase. Most vegetables have natural sulfur in them. I am feeling worse daily. I don't know what to do. The stomach pain last night woke me out of a sound sleep. Only my hands, arms, face and eyes are now swollen. GERDS is up and down. My elbow, and back pain, continues to be bad.

I was looking at the bottom of your post. I have many of your misdiagnoses.

Hugs

Gerri

ShayFL Enthusiast
If I have Thyroid problems, which my doctor won't check out, it might be the reason why I can't lose weight.

You do not have to be a slave to your doctor. You can find a new one. Or you can order your own thyroid tests. They arent very expensive. www.healthcheckusa.com usually has very good prices. You dont need a doctor to order the tests from them. Even if you have to sacrifice something you normally buy to afford the tests, it will be worth it.

I got my own tests and took them to my doctor with a copy of the new lab ranges for TSH. After 12 years of hell I finally got treatment for hypothyroid. It changed my life!!

nora-n Rookie

There are some people here who are very intolerant of sulfites, one is Rachel in the OMG thread here in the other food intolerance folder. The thread started with corn, but corn was not the issue, but sulfites and salicylates. And it has to do with the methylation cycle, with detoxification. When something is broken in the cycle, it dose not work properly and you feel sick when you get too much of something that clogs it all up. Like sulfites and sulfur in some cases, depending on what is broken. You can pop over and compare notes.

nora


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confused Community Regular

I was going to recommend what nora did. You should pop on over to the omg thread.

paula

Fabulous40 Newbie

Gerri -

Are you seeing an MD or a DO?

I switched from a medical doctor to a doctor of osteopathy because my medical doctor wouldn't diagnose me with anything and just gave me LOTS of medicines for each individual issue. I was gaining weight while exercising and eating properly (I thought). I had lots of gastro issues, high blood pressure, high cholesterol, migraines, hot flashes, night sweats, and depression. I really thought I was going through menopause, although I'm only 40, and I felt like crap all the time. I was taking Nexium for acid reflux, Zocor for cholesterol, Maxalt for migraines, Celexa for depression, and Cozaar for high blood pressure, along with a whole host of supplements for the menopause-like symptoms.

My DO figured out I was insulin resistant (which was causing menopause-like symptoms), and he suggested I delete all gluten products from my diet (because I'm type O blood and because of my gastrointestinal issues). He suggested cinnamon and tumeric for glucose control, and acai for general well-being. He also suggested acupuncture. I have lost only 7 pounds (slowly), but I feel so much better. My DO has taken me off of all my meds except the blood pressure medicine, and my cholesterol and insulin seem to be under control. I don't have the migraines, hot flashes or night sweats anymore, and my mood has increased dramatically.

I guess my point is - find another doctor for another opinion if you can afford it. Look for a doctor of osteopathy because they treat the whole person, not just individual symptoms. I know you are miserable, but perhaps the right doctor will make the right diagnosis and you'll get your body back under control.

Best of luck to you.

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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