Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Back On Gluten
0

17 posts in this topic

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.... :(

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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'.

0

Share this post


Link to post
Share on other sites




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.

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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"

(http://americanceliac.org/celiac-disease/diagnosis/)

I also read a study as well, but it seemed to focus on children (http://www.pediatricsdigest.mobi/content/115/5/1341.full). 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."

(http://www.mayomedicallaboratories.com/articles/hottopics/2010-06a1-celiac-bht.html)

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.

0

Share this post


Link to post
Share on other sites

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...

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,698
    • Total Posts
      921,787
  • Topics

  • Posts

    • When it's that high, it almost always means Celiac.  Sure, you can have Crohns, too.  Just like you can have Celiac and diabetes, the common cold or a hang nail.  I wouldn't jump to Chrohns.  I don't think the tTg really has anything to do with Chrohns?  Where did you see that?  Sometimes, a slightly elevate tTg can be elevated from other issues, but >100 is not a " slightly elevated" reading
    • Hi! I'm new here, and I'm looking for some information because I'm having a hard time finding it.  Over Labor Day weekend I got some kind of intestinal bug. I didn't think much of it until the D persisted once a day up til now. I tried a priobiotic but that didn't help much. I have bad anxiety and began to think that I was just anxious and stressed. No fever, no pain, all bloodwork is normal, so no infection or anemia. My mother has 5 siblings and 3 have celiac. One other one had a high result on a blood test but was never officially diagnosed and insists she doesn't have it. So I went to my local health fair and got the ttg-iga test, just in case. My result came back at >100. So I have called and scheduled a visit with a GI for next week. Aside from the recent intestinal issues I have never thought that I had any signs of celiac. I do have dermatographism and have had that since I was 20 (I am 28). I have severe anxiety. I had PUPPPS when I was pregnant with my daughter and it was miserable. It looks much like the skin rashes that celiacs have. Again, didn't think much of it. Because of my anxiety I am terrified that this high blood test is from something else, like crohn's. I don't have diabetes, my liver and thyroid numbers are fine. I think it's much more plausible that this is celiac because of my family history. But my anxiety says "what if it's crohns?" Does anyone have any insight? Is it true that the ttg iga can be elevated from crohns and not celiac? Is >100 pretty definitive of celiac? I didn't know if crohns was the cause if the number would be this high.  I'm just freaked out. 
    • This does say it is for NCGS....so not  for Celiacs.  There is a drug being developed that may actually break down the gluten in the stomach before it hits the intestines.  However, that is still in clinical trials.
    • could be from your neck, or it is, literally, in your head. perhaps a scan is needed.
    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,704
    • Most Online
      3,093

    Newest Member
    Fbmb
    Joined