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Not Celiac

Gerri

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Gerri Explorer
Gerri
Posted

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
nora-n
Posted

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
ravenwoodglass
Posted
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
Gerri
Posted
  • Author
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
Gerri
Posted
  • Author
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
ShayFL
Posted
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
nora-n
Posted

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
confused
Posted

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

paula

Fabulous40 Newbie
Fabulous40
Posted

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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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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