Jump to content

  • 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

Told To Go Back On Gluten

whattodo

Recommended Posts

whattodo Enthusiast
whattodo
Posted

Hi everyone, today i went to see a dietician. Unfortunately she told me not to go on a gluten free diet till i have my biopsy taken. I gave blood last week and the results have not come back yet. The dietician is chasing up the resluts for me and arranging a biopsy date. In the meantime i have been told to eat gluten to make sure the results are correct.

The thing is, i dont really want to cause any more damage if i have to. has anyone been through the same. Is there something i can do to make sure i get enough gluten in the shortest time possible.

Also, has anyone on a gluten diet had the bloodtest and biopsy and they came back negative????

Ideally i want to get a date through and then start eating gluten but dont know if it will be long enough?

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

If you want the most accurate tests possible, you have to continue eating gluten. That is what our bodies are reacting to....take it away, and under normal circumstances, our bodies heal. We don't "look" like Celiacs anymore, but we still are.

I'll be honest...there isn't a lot of point to doing a biopsy if you have been off gluten for an extended period of time.

However, you don't have to have the biopsy. You don't have to have a diagnosis by the medical community. If you choose to stay gluten free, stay gluten free. But the dietician is correct in saying that if you ARE having future testing done, don't go gluten free.

Guest j_mommy
Guest j_mommy
Posted

I am in teh same boat! My blood tests were positive april 1st but I was told to continue eating my reg diet until after my biopsy may 15! Unfortunately that is teh only way to get "true" results! But let me tell you that it is REALLY hard to eat Gluten now that I know that's what makes me sick....but I've been bearing it! I want the biopsy to show "truth"! but May 16th I'll bew gluten free!!!!! Good luck!

VydorScope Proficient
VydorScope
Posted

IMO, forget the bisopy and go gluten-free... the postive blood test is enough.

If you stop eating gluten, and get better. Then you start eating gluten and get sick... then you have your answer, eating gluten makes you sick, regardless of what label you want to put on it. The biopsy is NOT a conclusive test, and is an unneeded risk, IMO.

Guest j_mommy
Guest j_mommy
Posted

This is the problem!!!1 you put your trust in a Dr and go through all this for nothing!!! Jeez I wish there was a Dr in my area that specialized in Celiac AND had it themselves!!!! Wishful thinking I know but a girl can dream...... :rolleyes:

Islandgirl Newbie
Islandgirl
Posted

Look at it this from what I did - hindsight is 20/20. I internet searched myself into coming up with Celiac's, thought I was just so ahead of the pack by trying a gluten-free diet BEFORE going to the doctors, saving him a bunch of time right? And screwed up my blood test it came back negative. Now being told that if I want to re-do blood test and have the biopsy, I have to go back on gluten for three months minimum. I'm in my 4th week of gluten-free, feel 100% better, all symptoms gone after having them pretty severly for 8 months - the very thought of going back on gluten makes me bite my lip - except when I think about Goldfish, Ritz crackers & PRETZELS! Oh, how I miss pretzels! :rolleyes: (( My story is under the header: Left doctors feeling perplexed.......))

gfp Enthusiast
gfp
Posted
Hi everyone, today i went to see a dietician. Unfortunately she told me not to go on a gluten free diet till i have my biopsy taken. I gave blood last week and the results have not come back yet. The dietician is chasing up the resluts for me and arranging a biopsy date. In the meantime i have been told to eat gluten to make sure the results are correct.

The thing is, i dont really want to cause any more damage if i have to. has anyone been through the same. Is there something i can do to make sure i get enough gluten in the shortest time possible.

Also, has anyone on a gluten diet had the bloodtest and biopsy and they came back negative????

Ideally i want to get a date through and then start eating gluten but dont know if it will be long enough?

3 Choices....

1/ Go private get the results sooner

2/ Don't have the biopsy ... go off the blood tests...

3/ Pay for it yourself and jump on easyjet.. get it done here the same day...thoiugh if your cute about it you can claim it back via the NHS with the correct form if you got taken ill by emergency....

Incidentally if you had the blood test here you get the results the same day if the test is done in the morning... it costs about 60 quid for a celiac panel .. biopsy I have no idea...how much and how long.. the staining and examination is liely to take at least overnight...

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

Celiac.com Sponsor (A8-M):


Electra Enthusiast
Electra
Posted

I had a positive blood test while on Gluten, but was faced with the same decision. I couldn't even get to the specialist for almost a month and then I still had to wait a couple of weeks for the biopsy. I tried to stay on Gluten but I have 4 kids, work 50+ hours a week, and I volunteer a lot, so being so sick really took a toll on me. I had been rushed to the hospital a couple of times and I had been having black outs where my mood would completely change and I wouldn't remember rambling on for a while. That's when I decided there was no way it was worth it. I have kids to take care of and they were scared to death. I was worried that I may have one of these black outs while driving in a vehicle with one or more of my kids and there was NO WAY I was risking that. I went gluten free and a month later had the biopsy and I still came up positive with mild damage. Imagine what that damage might have been like if I'd had the biopsy a month earlier YIKES!! I'm so glad I went Gluten free when I did, because I was getting to the point of no return. I accidentally got Glutened the other day and was sick within a half hour. For two hours I had dry heave type symptoms and I NEVER wish to experience that again. I WILL NEVER eat anything again without reading a label, and I'll NEVER eat Gluten on purpose again, because it is definitely toxic to me. Good Luck and I hope you get the answers you need.

kriswill Newbie
kriswill
Posted
I am in teh same boat! My blood tests were positive april 1st but I was told to continue eating my reg diet until after my biopsy may 15! Unfortunately that is teh only way to get "true" results! But let me tell you that it is REALLY hard to eat Gluten now that I know that's what makes me sick....but I've been bearing it! I want the biopsy to show "truth"! but May 16th I'll bew gluten free!!!!! Good luck!

The thing is YOU know the TRUTH!!! Why do you need a biopsy to tell you so. We were gluten free for 9 days before by daughter's biopsy. They told me it would change the histology of it and may have changed the results from severe to moderate. I didn't care. I didn't want her to be sick any longer. Go with your "gut" and do what makes you feel healthy!!

RiceGuy Collaborator
RiceGuy
Posted

Suppose the tests came back negative? Would you take that over how you feel and go back to eating gluten again? IMHO it makes no sense to purposely make yourself sick just to get the answer you already have.

Just my two cents...

nora-n Rookie
nora-n
Posted
3 Choices....

1/ Go private get the results sooner

2/ Don't have the biopsy ... go off the blood tests...

3/ Pay for it yourself and jump on easyjet.. get it done here the same day

Where is "here"?

nora

Ursa Major Collaborator
Ursa Major
Posted
Where is "here"?

nora

gfp is in France.

nora-n Rookie
nora-n
Posted

I am in europe too, so what clinic, and are they very good at looking at celiac biopsies, etc?

nora

JennyC Enthusiast
JennyC
Posted
Suppose the tests came back negative? Would you take that over how you feel and go back to eating gluten again? IMHO it makes no sense to purposely make yourself sick just to get the answer you already have.

Just my two cents...

This is one of my many reasons, and I think my best reason, for not allowing the doctor to biopsy my son. He had all of the classic celiac symptoms, be had positive blood work, and finally all of his symptoms disappeared and he had gained 3 pounds in the first month after going gluten free. First of all, I am not going to put him through hell to confirm what is already evident by dietary response and blood work. Secondly, even if the biopsy came back negative I would not take it seriously and I would definitely not put him back on gluten.

gfp Enthusiast
gfp
Posted
I am in europe too, so what clinic, and are they very good at looking at celiac biopsies, etc?

nora

Nora, for the biopsies I dunno.... blood work yes.... I'd lean towrds no on biopsies simply because they require practice and celiac disease is underdiagnosed so they get less practice... as to the medical system overall... lived in Oslo for a year and Stavanger another and honestly the Norwegian one isn't even close... (although I did get good dental work)

Not sure if you have the same reciprocal health arrangements or not (since its partly EU based)

Teacher1958 Apprentice
Teacher1958
Posted
This is one of my many reasons, and I think my best reason, for not allowing the doctor to biopsy my son. He had all of the classic celiac symptoms, be had positive blood work, and finally all of his symptoms disappeared and he had gained 3 pounds in the first month after going gluten free. First of all, I am not going to put him through hell to confirm what is already evident by dietary response and blood work. Secondly, even if the biopsy came back negative I would not take it seriously and I would definitely not put him back on gluten.

I am 49 years old. I had my first upper GI at seven years of age. I used to lie in bed and sob from the pain as a child. There has never been a time in my life when I didn't have some type of digestive symptoms- nervous stomach, ulcers (never showed up in any tests, so I don't know how the diagnosis was made), vomiting (preceded by burping a sulfur/egg taste all day), embarrassing explosive gas, and finally, the symptom that clued me in- bowel movements that stuck to the sides of the toilet with what looked like an oil slick on top of the water. I looked that one up on the internet about a month ago, and BINGO, I knew immediately. I had many of the symptoms that are not related to the GI tract, too.

While on vacation recently, the symptoms became very severe. After several days, they had not improved, so when I got home, I went to my family doctor. I had already put myself on a gluten free diet, and she told me to continue it for the next week. She also told me to go off of my Vitorin (cholesterol drug), because that can cause weird BM's, too (I had them before I went on the Vitorin, so I knew this wasn't the culprit). To make a long story short, I told my doctor that I wouldn't even consider eating gluten again. She then ordered a blood test that she says will detect the the gluten sensitivity/intolerance/celiac disease (whatever I have). I am awaiting the results. I will find out the name of the test, if it does its job.

I don't blame you one bit for feeling the way you do, not wanting to put your son back on wheat products. I feel as if I have been reborn. My ADD is gone, the fatigue is gone, I can actually eat a meal and not hear a sound "down below," my mouth sores are gone, my depression is much better, my spacy behavior is gone, my lethargy and lack of motivation are gone. On top of that- and this is very weird- I asked for a fasting blood cholesterol test before I agreed to go back on the Vitorin, and I no longer have high cholesterol!!! There is no way I would eat gluten again, if you paid me a million dollars.

Archived

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

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


  • Member Statistics

    • Total Members
      131,678
    • Most Online (within 30 mins)
      7,748
    Kristina S
    Newest Member
    Kristina S
    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

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.