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

Back On Gluten

granolagal

Recommended Posts

granolagal Apprentice
granolagal
Posted

So I just got a call that I need to get in for an endoscopy and biopsy asap. I was diagnosed with celiac disease off blood work alone 4 weeks ago, and have been gluten-free ever since. So now I have to go back on gluten (and eat it every single day) so that I have a chance at accurate test results from my procedure which is scheduled for December 20th (5 weeks from today).

Nervous about how the next 5 weeks are going to go.... :(

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

Celiac.com Sponsor (A8-M):


navigator Apprentice
navigator
Posted

I know how you feel. I went back on gluten for 7 weeks before endoscope and biopsy on 26th October. My worst coeliac sympton is fatigue and that hit once I was back on gluten. Although I also had bowel and stomach issues, for me the fatigue was the worst. I have to say that I only managed to last it out as I wasn't working at the time. However, the seven weeks which seemed such a long way away at the start, came to an end and once I was back gluten free my health began to improve.

Good luck, hope you don't have too bad a time.

granolagal Apprentice
granolagal
Posted
  • Author

I know how you feel. I went back on gluten for 7 weeks before endoscope and biopsy on 26th October. My worst coeliac sympton is fatigue and that hit once I was back on gluten. Although I also had bowel and stomach issues, for me the fatigue was the worst. I have to say that I only managed to last it out as I wasn't working at the time. However, the seven weeks which seemed such a long way away at the start, came to an end and once I was back gluten free my health began to improve.

Good luck, hope you don't have too bad a time.

Thanks Navigator. I just hope 5 weeks back on gluten is enough time to show up on the scope/biopsy. I'd hate to go through all of this and then things come back inconclusive or false negative because I was gluten-free only 5 weeks before then. Oh well, I think it's important to try so I'll just bite the bullet. Hopefully I won't get to the point of needing to be off work, but it may come to that. Right before I went gluten-free I had taken a whole week of sick leave and then worked 1/2 days for another week because I just couldn't manage. But that was after a life-time of eating gluten. So...we'll see how it goes!

svs Apprentice
svs
Posted

Hopefully it will all go well and be worth it in the end!

navigator Apprentice
navigator
Posted

Just try and take care of yourself as much as you can. Some of the things I used were bubble baths, reading and going for massages and reflexology. I found that I was slipping into a down and these helped me. I also did a daily countdown and kept thinking 'that's one less day of gluten to go'.

Silencio Enthusiast
Silencio
Posted

Whats the point of going back on gluten if the blood tests already say you have celiac? I was also diagnosed by blood test only. Could the blood tests be wrong? I have an appointment coming up for a GI and im thinking they are going to tell me the same thing.

ravenwoodglass Mentor
ravenwoodglass
Posted

Whats the point of going back on gluten if the blood tests already say you have celiac? I was also diagnosed by blood test only. Could the blood tests be wrong? I have an appointment coming up for a GI and im thinking they are going to tell me the same thing.

When blood tests are positive they are positive. False negatives are common but not false positives. It is up to you whether you want an endo or not. But if you do want one you do need to keep eating gluten until that is done. Even then you do have a risk of a false negative on the biopsy so go on the diet as soon as the test is done and stay on it even if the biopsies are negative.

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

Celiac.com Sponsor (A8-M):


granolagal Apprentice
granolagal
Posted
  • Author

When blood tests are positive they are positive. False negatives are common but not false positives. It is up to you whether you want an endo or not. But if you do want one you do need to keep eating gluten until that is done. Even then you do have a risk of a false negative on the biopsy so go on the diet as soon as the test is done and stay on it even if the biopsies are negative.

I thought I read somewhere that although very rare, false positives do happen?

"One negative aspect of the TTG antibody is that it can be falsely positive in a patient who has another autoimmune condition"

(Open Original Shared Link)

I also read a study as well, but it seemed to focus on children (Open Original Shared Link). My ttg score falls within the medium range 20-100 (mine = 79).

However, aside from "just" confirming the celiac disease diagnosis, there are also other reasons to get the biopsy:

"For adults there is another importance for a biopsy, and that is that the biopsy is a baseline for which we follow up. We know about 50% of people who are diagnosed with celiac disease as an adult will not heal their intestine and failure to heal the intestine may be associated with a negative outcome."

(Open Original Shared Link)

Anyway, I'm certainly no expert (that's putting it mildly!!) but that's what I found after doing some quick internet research. For me, I think it's better to get this data now, and then get on with my gluten-free life after the procedure is done.

granolagal Apprentice
granolagal
Posted
  • Author

Me again.... Also wondering if the biopsy/scope can tell the difference between gluten intolerance/sensitivity versus celiac?

I don't know enough about all of this. Which is why I'm happy to go to a GI to talk about it all...

Silencio Enthusiast
Silencio
Posted

I don't know enough about all of this. Which is why I'm happy to go to a GI to talk about it all...

Same here, im so new to all of this, really looking forward to talking to the GI. It cant come soon enough. Doctor said he's afraid I might have cancer. Scared the hell out of me.

Reba32 Rookie
Reba32
Posted

I don't think just intolerance shows up on intestinal biopsy, only outright Celiac disease does. I think the only way to dx intolerance is to find out how the elimination diet works for you. If you feel better on a gluten free diet, and you have no markers in your blood and biopsy is negative, then you're likely intolerant, but not Celiac. But if you have a positive blood result for Celiac disease, then you're positive. Biopsies are often done incorrectly, or not enough samples are taken, or they're taken from a non-damaged part of the intestine.

Either way, if you feel better not eating gluten, that's what you should continue with. Because I'm fairly certain, as are some doctors, that gluten intolerance can escalate to Celiac disease if left untreated. And by that time the damage may be irreversible.

granolagal Apprentice
granolagal
Posted
  • Author

Either way, if you feel better not eating gluten, that's what you should continue with.

That's the really weird twist to all of this. I went gluten free for 4 weeks and my stomach only got progressively worse. The bloating and pains ended up stretching all around to my back. I was so sick for the past week my stomach felt like it was exploding. But I never got sick. If anything, I couldn't seem to get my digestive tract moving. Even with all kinds of supplements, digestive enzymes, and natural non-gluten fibre. I was so sick yesterday I left work early. Then I got the call about the biopsy, so I went back to eating gluten right away. It's been 24 hours and I feel BETTER than I did before!?!?!? My stomach pains have almost gone away and same with my lower back pains. Isn't that strange??

Anyway, I'm not trying to say that I don't have an issue with gluten - because I can't deny that my ttg came back at 79. But it's just all so confusing for me. I thought I'd go gluten-free and then gradually start to feel better and it would all come together as a big "a-ha" moment. But it seems like every day that goes by leaves me more confused. Hopefully my GI will help talk it all out with me.

granolagal Apprentice
granolagal
Posted
  • Author

Same here, im so new to all of this, really looking forward to talking to the GI. It cant come soon enough. Doctor said he's afraid I might have cancer. Scared the hell out of me.

Oh man, that is very scary. Hopefully you get an appointment sooner than later so you can get your answers! I remember when my doctor said I had cancerous cells and had to get a biopsy to see if they were malignant or benign. I am thankful to say that in my case they were benign but I know the anxiety that lasted throughout the process. I pray that your outcome will be the same as well.

Feel free to continue to post as you go through this - everyone on here is so supportive.

Reba32 Rookie
Reba32
Posted

what were you eating typically after you went gluten free? You likely also have other intolerances, or you've overtaxed your digestive system with something while its trying to heal.

granolagal Apprentice
granolagal
Posted
  • Author

what were you eating typically after you went gluten free? You likely also have other intolerances, or you've overtaxed your digestive system with something while its trying to heal.

As best I could I stuck to non-processed food. Although I did try the occasional gluten-free product, I tried to steer clear of them. I virtually ate the same types of foods as I did before going gluten-free. Lots of fruits and raw vegetables, beans, lentils, dairy products (and I did call the companies to confirm which products had cc risks), eggs, nuts, and....that just about sums it up. Typical day for me would be:

Breakfast: fruit salad (made myself) --->no change from pre gluten-free diet

Lunch: salad or veggies and dip or egg salad on lettuce --->typical pre gluten-free diet except I used to eat the egg salad in wraps

Dinner: stir fry (no soya sauce) on brown rice, or lentil tacos (gluten-free corn tortillas), or vegetarian bean chili --->somewhat similar to gluten-free diet except I used to eat more vegetarian faux-meat type products (like veggie nuggets, mexican veggie ground round, etc)

Snacks: nuts, gluten-free popcorn, glosette raisins (too hard to resist... :rolleyes: ), more frut --->somewhat similar to pre gluten-free diet except I used to eat a lot more crackers and cheese (that was my real guilty processed pleasure = crackers)

So...I don't know. It's strange. I thought maybe I was eating too many beans, so I cut those out altogether with no noticed improvement. And now, after eating Subway, and chocolate chip cookies, and crackers...my stomach is settling down!?! :blink:

India Contributor
India
Posted

If you're going to do the gluten challenge, my advice would be not to overdo it. I was so determined to make sure that my result would be reliable that I probably ate far too much gluten and I'm pretty sure it slowed down my recovery tremendously :( Don't be tempted to eat more than you need to.

Debbypete Newbie
Debbypete
Posted

I, also have been on the self diagnosis/gluten free/ back to gluten challenge/gastroscopy treadmill. Waiting for results, have positive tested for the gene DQ2, though staying on the gluten in case the biopsies are negative, then will ask for the IGa and IGg tests. THEN I am definately going gluten free the majority, anyway because I know how much better I feel on this regime. Good luck with it all.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. TheDHhurts
      - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Prana Organics no longer GFCO-certified

      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what...
    2. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    3. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
    4. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
    5. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,926
    • Most Online (within 30 mins)
      7,748
    Kptaylor
    Newest Member
    Kptaylor
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • TheDHhurts
      Prana Organics no longer GFCO-certified

      By TheDHhurts · Posted

      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!
    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
×
×
  • 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.