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deb Apprentice
deb
Posted

I don

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burdee Enthusiast
burdee
Posted

Hey Deb:

Don't settle for the "IBS" label. That's a doctor copout. Someone on this board renamed that label "IDK" or "I don't know" which is what doctors SHOULD say rather than using a disease sounding acronym to hide their ignorance. I prefer to translate IBS as "I'm being squeezed", because that's exactly how my intestines feel when I'm suffering celiac relapse (gluten slip) pain. Your abdominal symptoms and pain sound SOOOO much like mine pre gluten-free diet. If I sound a little angry about the IBS diagnosis, that's because my doctor told me "IBS" 7 years ago to explain my excruciating pain and recommended the IBS diet which included more 'whole wheat products' to resolve constipation. Obviously the wheat just exacerbated the pains which my doctor didn't recognize as celiac. Either get a second opinion from a doctor who will consider the possibility that you have celiac disease or try the gluten free diet to see whether that reduces your symptoms. ;)

BURDEE

Guest jhmom
Guest jhmom
Posted

Hi Deb and welcome to the board!

Your story sounds all too familiar, I suffered with abdominal pain, diarrhea, etc for over a year only to be told I had IBS or the I don't know dx. I believe my Gastro doc is a good one and he even stated to me that sometimes it takes time for a disease to show up in the blood but time was something I didn't have.

I agree with Burdee you can try the gluten-free for a couple of months to see if you show an improvement OR you can order a stool panel test from Open Original Shared Link which is more sensitive than blood, more accurate and you do not have to be on gluten for it to be accurate.

Enterolab is the way I was dx and it was well worth the money I spent. I know some people on this board do not accept Enterolab and think it's not on the up and up but I will tell you from experience that he is for real, the test ARE accurate and I trust him 100%!!! In the beginning I was skeptical and thought "maybe this is not what is wrong with me, maybe its something else, maybe I can eat wheat/gluten" I was WRONG, I have had a few "cross contaminations accidents" and I know for sure that I have a problem with it, so an improvement on the diet is a test in itself!

Good luck and take care!

Guest gillian502
Guest gillian502
Posted

I agree not to accept the IBS diagnosis until every other avenue has been exhausted. Before my dr. discovered my Celiac and my Colitis, he thought I may have IBS, and all I could think was, "yeah, someone's full of BS, but it's not I..." ;)

deb Apprentice
deb
Posted
  • Author

Hey Thanks for responding guys. I feel better now that I know someone is listening to me. My GP's nurse told me "why don't you just go on a gluten-free diet" The only thing is I really want to know if this is what is wrong. It is my understanding the small bowel biopsy would be inaccruate if I was on the diet. The GI said in his notes to my family doc (which gave me a copy of the consult) that if the BE did not reproduce my pain than he wanted to look at doing asmall bowel series. Is that the same as the biopsy to show celic?? any way the BE was only degrading & uncomfortable. not the same pain in any way shape or form. again thanks for listening. Deb

gf4life Enthusiast
gf4life
Posted

Hi Deb,

The small bowel series is a series of x-rays. It will not show Celiac. The stomach scope they did before is what they do for the biopsy. They need to take tissue samples from your small intestines. It doesn't sound like they did that during the previous scope. Mine didn't either and I had to do it again to get the biopsies, which ended up being negative, since I had gone gluten free prior to the biopsy. I recommend that you do NOT go gluten free before they are finished testing. Even a few weeks being gluten free can mess up your future results.

If you want solid results for your own benefit I recommend Enterolab. Most GI doctors will not accept the results for a diagnosis, but it will help you decide if you need to be gluten free for the rest of your life.

God bless,

Mariann

deb Apprentice
deb
Posted
  • Author

Thanks Mariann for the info. you are right I did not have samples of my small bowel. the stomach scope was done by a general surgen and he told me he does not feel quified to go that far down. He just went past the stomach a little way. I saw him for a consult on my gallbladder. I really liked the fact he sugested I just wait and see since I didn't have any GB findings. I really respect him for not just wanting to cut on me. I hope I can find out what for sure the GI wants to do next. I agree that xrays won't show what I am wanting to confirm. Is the Entrolab just stool test or do they do blood and stool? Thans anagin for the help. Deb :)

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Tasha2004 Contributor
Tasha2004
Posted

Could it also be fibromyalgia or thyroid trouble?

these things all run so much together/.

deb Apprentice
deb
Posted
  • Author

HI Tasha,

No its not fibromyaliga, I do not have the trigger points. And my thyroid has always been in the low normal range, but still normal. I have a lot of the symptoms of hypothroidism, but have not gained any weight. you know really dry itchy skin, facial hair growth, tiredness, etc. That has been going on for almost 18 years. every year at the health fair I have blood drawn and it showes all sorts of different results. nothing serious, except my chol. thats been up and down for years & years. Took lipator for 2 years and then the new dr I got took me off of it. chol went back up , so now he wants me to take omega 3. plus the fiber thing and excersize

Tasha2004 Contributor
Tasha2004
Posted

OK, then maybe the others are right and you should try Enterolab?

I do hope you figure it out soon!

deb Apprentice
deb
Posted
  • Author

Well I checked with the DR yesterday and today and still can't get an answer to what results were for my BE. I am so frustrated I don't know what to do. :unsure: I'm interested to know how many of you have had luck with your doc's and the Enterolab results???? Also does anyone know about insurance and the Lab. any input is apperciated. Thanks Deb

gf4life Enthusiast
gf4life
Posted

Hi Deb,

Sorry I didn't get right back to you, but Enterolab does stool tests and a cheek swab gene test. They do NOT do blood tests.

As for the insurance issue, some people have gotten reimbursed by their insurance company, but it varies with the different insurance companies.

I have had luck with some of my children's doctors accepting the results: neurologist, rheumotologist/immunologist, ENT, and physicians assistant at our primary care office.

The doctors I've had that have NOT accepted it are my own GI, the pediatrician at our primary care office. My children's ped. GI didn't accept the results for diagnositic purposes, but he was willing to keep his mind open and follow their progress on the diet. That is a start at least.

I never could get any answers about any of my tests including the BE, except they were "fine". Everything was normal, I just felt sick everyday of my life for no apparent reason! Well it is pretty apparent to me, since if I get even a tiny bit of gluten in my diet I get sick again for a few weeks. I am so glad that I feel better on the gluten-free diet. :D

God bless,

Mariann

deb Apprentice
deb
Posted
  • Author

Hey Mariann thanks for responding. I was talking to a co worker today and she ask me why I don't just go gluten-free. I just need to know , I think so if I am I can have my children tested also. I fell like I owe It to them. I guess I'm worried that if I do go gluten-free and I fell better I won't be sure If it isn't because I want it to work or I really have Celaic. I am starting to think the Dr's Think it's all in my head. Oh well I'm starting to sound like a real head case. Thanks again. Deb :blink:

gf4life Enthusiast
gf4life
Posted

Deb,

I felt the same as you. I had to have something in writing in front of me to prove to me that I really had a problem with gluten. I knew I would never be able to stay gluten free forever without it. I would start feeling better and then convince myself that it was "all in my head" and go back on gluten occasionally. I didn't want to play those kinds of mind games with myself! Also I wanted to be sure before testing my kids. I am so thankful for Enterolab and Dr. Fine, without them I never would have been secure enough with my self diagnosis to go gluten-free for life!!

And I got the "why don't you just go gluten-free?" thing a lot. But it just wasn't that simple for me... :rolleyes:

God bless,

Mariann

deb Apprentice
deb
Posted
  • Author

Got the results from my BE. It showed I have polyps and some sort of a pouch in the upper right part of the colon. :( Still these areas are not where I am having problems. I,m not sure if I should post a new topic or just keep adding to the original. :unsure: Any way has anyone else had a colon problem, polyps etc. along with their celiac disease?? have not heard from the GI, but I guess now I will have to have a colonoscopy. Any replies are appreciated. Thanks Deb

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    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      My journey is it gluten or fiber?

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    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
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