Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Am As Confused As The Doctors? Am I celiac disease?

mcoop911

Recommended Posts

mcoop911 Newbie
mcoop911
Posted

I was told in late October of 2006 that I have Celiac Disease. This was by a colo-rectal specialist saying this based on my 3 year history of symptoms and 2 hospitalizations (and low vitamin D). It was recommended at that point to go gluten-free which I did. Two weeks later his nurse called to say my blood work was "positive" and that at some point I should get a confirming EGD w/ biopsy - he doesn't do those type biopsies; he is strictly lower GI. I got a referral to a local gastroenterologist who reviewed all my accompanying labs and performed the EGD w/ biopsy the first week of December. My biopsy was "normal" but my response to the gluten-free diet has been nothing short of miraculous.

In follow up appointments to all the above physicians, one says I'm celiac disease and the other says not celiac disease. Other than my opinion that I should never go back to WBRO or any gluten containing product what should be my next step (especially for my 3 kids, one of which is symptomatic)?

Additionally, I found out the "positive lab work" was really a suppressed IgA. Should this blood work be repeated? It was sent to Mayo Clinic.

Thanks out there for any advice.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


outOfThisWorld Newbie
outOfThisWorld
Posted

Sorry I don't have any advice at this time as I am trying to work out if I have gluten/thyroid issues. However, I am interested to hear what symptoms you were suffering from that were miraculously improved by going gluten-free?

mamaw Community Regular
mamaw
Posted

There are alot of people who dx themselves no matter what the medical outcome my be. In other words if you feel so much better on the diet , stay on the diet. It will not hurt you. Some people want that doctor confirmation & seal of approval. But I think if your body feels better who cares what the doctor says, you know how you feel....Also you could do the DNA testing to see if you carry the genes....

If you had the endo & colonoscopy done while you were off of gluten that will alter your results...and not everyone has intestional damage... Mine was caught before I caused damage which is a good thing.

In the end the choice is yours to decide ..Doctors in the US need to catch up in regards to celiac.

best of luck

mamaw

Nancym Enthusiast
Nancym
Posted

You're falling into a gray area lots of us do. Many doctors will diagnos celiac on the basis of blood work alone or positive response to the diet. Were you gluten-free before your biopsy? If so, how long? That could skew your results too.

Anyway, many of us realize that the testing is obviously inadequate and are choosing to follow the diet anyway, despite our tests results, based upon positive experiences with the diet.

You don't need your doctor's permission to make dietary changes.

happygirl Collaborator
happygirl
Posted

There are many on this board who have unclear diagnoses because of poor medical advice/treatment by doctors, as well as many who have positive bloodwork/no biopsy, etc etc. Every iteration possible----you can find on this board.

I had some positive bloodwork, but my biopsy was taken while gluten free and was negative. Many doctors have told me I "don't" have it and that I need to know if I have it or not. I know that gluten is a problem for me....even my idiot GI who performed the biopsy on me after telling me to start the diet saw the change in my health and agreed that gluten was a serious problem for me. I think that my family, friends, co-workers, etc would describe going gluten free as miraculous for me as well!!!! It gave me my life back. I have not been willing to do a "gluten challenge" for months to see if I have villous damage-for me it is not worth it. If you have more testing done, you will need to be back on gluten for awhile for the results to be as accurate as possible.

Either way-if you do better on a gluten free diet, you may have Celiac, or you may have non-Celiac gluten intolerance/sensitivity that will not show up on a biopsy, etc. There are many NCs on here....the treatment is the same. We don't really differentiate on here---we are here to support those on a gluten free diet.

Good luck!

Laura

mcoop911 Newbie
mcoop911
Posted
  • Author
There are many on this board who have unclear diagnoses because of poor medical advice/treatment by doctors, as well as many who have positive bloodwork/no biopsy, etc etc. Every iteration possible----you can find on this board.

I had some positive bloodwork, but my biopsy was taken while gluten free and was negative. Many doctors have told me I "don't" have it and that I need to know if I have it or not. I know that gluten is a problem for me....even my idiot GI who performed the biopsy on me after telling me to start the diet saw the change in my health and agreed that gluten was a serious problem for me. I think that my family, friends, co-workers, etc would describe going gluten free as miraculous for me as well!!!! It gave me my life back. I have not been willing to do a "gluten challenge" for months to see if I have villous damage-for me it is not worth it. If you have more testing done, you will need to be back on gluten for awhile for the results to be as accurate as possible.

Either way-if you do better on a gluten free diet, you may have Celiac, or you may have non-Celiac gluten intolerance/sensitivity that will not show up on a biopsy, etc. There are many NCs on here....the treatment is the same. We don't really differentiate on here---we are here to support those on a gluten free diet.

Good luck!

Laura

Thanks for your advice about Dr. Peter Green's book. I bought it last month and passed it along to another Celiac friend. I was gluten-free for about 4-6 weeks before the biopsy. Is that short length of time sufficient to produce a false negative? My GI guy thought that I would still show villious damage due to the fact I was symptomatic for over 3 years. (He is an idiot as well, didn't do a colonsocopy- said I'd have to be gluten-free for that biopsy?).

Thanks.

mcoop911 Newbie
mcoop911
Posted
  • Author
Sorry I don't have any advice at this time as I am trying to work out if I have gluten/thyroid issues. However, I am interested to hear what symptoms you were suffering from that were miraculously improved by going gluten-free?

You asked about symptoms? For over threee years (including two hospitalizations of one week each) I had truly disabling diarrhea and horrible fatigue. I gave up a very solid career of over 18 years due to this illness.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

You can be full force eating 100% gluten and your biopsy can still be negative. celiac disease is a patchy disease....so if they don't sample enough places, they could easily miss where the damage is. So even under ideal circumstances (eating gluten, and multiple biopsies in multiple locations), the biopsies might miss the damage. Add going gluten free, plus---did he take multiple biopsies in multiple locations?---and that can decrease even further the accuracy of the biopsy. The biopsy can rule Celiac IN but unless the "whole" 22 ft of small intestine is biopsied ;), it really can't rule it out.

Like mentioned above, I was gluten-free for 5 weeks, and he only took one biopsy. So for me and most knowledgable Celiac doctors, it is hard to say that it was a conclusive test by ANY means. So yes, going gluten free can definitely impact it. Some people heal quicker than others.

That all being said.....if you have non-Celiac gluten intolerance, you won't have villous atrophy....but will still react to gluten.

Happy that you enjoyed the book---it really is a great reference for what they know about Celiac. Non Celiac gluten intolerance still is overlooked, but hey, the treatment is the same---so I'll be happy for what I can get :).

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,191
    • Most Online (within 30 mins)
      7,748
    teresa1955
    Newest Member
    teresa1955
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...