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

Confusion About Gluten Intolerance
0

25 posts in this topic

I am pre-diagnosis, but scheduled to have an upper endo in about two weeks. I am not eating gluten free completely now because I do not want to mess up the test and get false negatives, but I am eating as carefully as possible to avoid my symptoms. So, today, for lunch I had a Special K protein shake and goldfish pretzels. Know the goldfish have gluten but was not sure about the shake but certainly had a bit of stomach upset and indigestion afterwards. For dinner I had what I thought would give me no problems - a microwaveable meatless burger that said it was gluten free, brocolli, and wild rice with the flavor packet (which I hear has wheat but I have never had reactions to it before) and I have already had to run to the bathroom twice :(

So my question is, is it possible to have reactions to some foods sometimes but not all of the time??

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi Sarah,

Yes, it is possible for an irritated and inflamed digestive system to react inconsistently. It would be surprising if it didn't really. Even after people go gluten-free, they can have ongoing problems with foods that are not gluten for a while until their gut heals. Imagine you have a burn on your hand. And then bump the burned hand against a doorway. It hurts. If you then bump the hand against a chair it will hurt too. It doesn't matter that the bumped objects are not the same things, the wound is still sensitive regardless. Once the burn heals you can bump it against a chair or door or a cat head and it won't hurt much more than any other part of the body would. But think about how long it takes to heal a burn also. It doesn't happen in 1 or 2 days. It takes quite a few days to get better.

I am assuming you are not one of those perfects kids who actually listened to their parents when they said don't touch the stove it's hot! So you know how a burn can be. :)

0

Share this post


Link to post
Share on other sites

Thanks for the reply! I feel so confused about all this. Things seemed much simpler when I thought all this was just due to my lack of a gall bladder! Now, with the endo coming up, I feel as if I don't know what I am doing. I don't know how much gluten to eat now...if I should not eat any gluten free foods because that might screw up the results of the endo. Ugh. What a mess!

0

Share this post


Link to post
Share on other sites

Thanks for the reply! I feel so confused about all this. Things seemed much simpler when I thought all this was just due to my lack of a gall bladder! Now, with the endo coming up, I feel as if I don't know what I am doing. I don't know how much gluten to eat now...if I should not eat any gluten free foods because that might screw up the results of the endo. Ugh. What a mess!

Hi Sarah,

It can be very confusing when starting out. Often people recommend 2 slices of bread a day for testing purposes. If you can stay with a regular gluten diet until the testing is done that is best. The tests are not perfect and if the antibodies are dropping you are less likely to get accurate test results. It is better not to start the gluten-free diet before getting the testing done.

There are several people on the forum who have had their gall bladders removed. Gall bladder issues and celiac seem to be good friends.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes

http://www.celiac.co...e-free-recipes/

Super Easy Meal Ideas Anyone?

http://www.celiac.co...l-ideas-anyone/

0

Share this post


Link to post
Share on other sites

Hi Sarah,

It can be very confusing when starting out. Often people recommend 2 slices of bread a day for testing purposes. If you can stay with a regular gluten diet until the testing is done that is best. The tests are not perfect and if the antibodies are dropping you are less likely to get accurate test results. It is better not to start the gluten-free diet before getting the testing done.

There are several people on the forum who have had their gall bladders removed. Gall bladder issues and celiac seem to be good friends.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes

http://www.celiac.co...e-free-recipes/

Super Easy Meal Ideas Anyone?

http://www.celiac.co...l-ideas-anyone/

Thanks for all the help!! It's good to be in a place with so many people who share the same issues...even background of issues (like gall bladder removals!)

Right now, I am not consciously going gluten free - but I am also not purposely just eating food with gluten. Like before this happened, I eat a pretty good mix. Would you recommend amping up the ingestion of gluten before the test?

What makes this difficult right now is that my husband and I are planning on trying to get pregnant soon and because of that, my endocrinologist wants me on a low carb diet, so honestly, gluten free is very compatible with that, which is why I have not been eating a ton of gluten lately. However the two slices of bread thing does seem workable even with the low carb rule.

0

Share this post


Link to post
Share on other sites




I have done low carb and I think you could do the 2 slices of bread or equivalent ok. At worst it might very slightly slow weight loss. If you are trying for a baby it would be very good to have your testing done. There can be some issues around fertility and pregnancy with undiagnosed celiac, but the prognosis with diagnosis and gluten-free diet is very good.

I am on my cell and dont have the research to hand but someone may be able to chip in

Good luck

0

Share this post


Link to post
Share on other sites

I have done low carb and I think you could do the 2 slices of bread or equivalent ok. At worst it might very slightly slow weight loss. If you are trying for a baby it would be very good to have your testing done. There can be some issues around fertility and pregnancy with undiagnosed celiac, but the prognosis with diagnosis and gluten-free diet is very good.

I am on my cell and dont have the research to hand but someone may be able to chip in

Good luck

Especially with the low carb breads they have now, it is especially doable!! It may be unpleasant...but doable.

I have previously been diagnosed with pcos, so fertility may be a problem anyway, but for about two years now, things have been working the way they should, so I'm hopeful that with that and eventually a gluten free diet it may not be AS hard!

0

Share this post


Link to post
Share on other sites

....Would you recommend amping up the ingestion of gluten before the test?

I sure wouldn't. You seem to be getting plenty & as more research comes out, more Drs are recommending less gluten than 2 slices of bread anyway. Some are 1/2 slice/day & one oft-quoted celiac center is saying a single cracker/day.

0

Share this post


Link to post
Share on other sites

I sure wouldn't. You seem to be getting plenty & as more research comes out, more Drs are recommending less gluten than 2 slices of bread anyway. Some are 1/2 slice/day & one oft-quoted celiac center is saying a single cracker/day.

Wow! Only a single cracker/day...that's barely any gluten. Of course, I would guess there is gluten in places that one wouldn't expect. Well, at the very least, I won't add any more sources of gluten to my diet prior to the test.

0

Share this post


Link to post
Share on other sites

Hi Sarah,

There is no guarantee you will get accurate test results in the best of cases. So we can't tell you for sure what amount of gluten will be needed for you to get a positive result, vs another person with a different immune system. We aren't all the same. Our immune systems are individual and can react differently. But your doctor or your endocrinologist is the person who should give you that advice. Personally I don't think people should change their diets at all until the testing is completed.

If you search the forum there are lots of threads about pregnancy. I suggest you wait 6 months before going for it. That gives your body some time to heal and store nutrients it will need. Some women report their celiac symptoms decrease temporarily during pregnancy, but start back up afterwards. So that is something to read up on. You also should check into breast feeding timelines and introduction of gluten. It may be that the rates of celiac are related to the age at introduction of gluten.

0

Share this post


Link to post
Share on other sites

Hi Sarah,

There is no guarantee you will get accurate test results in the best of cases. So we can't tell you for sure what amount of gluten will be needed for you to get a positive result, vs another person with a different immune system. We aren't all the same. Our immune systems are individual and can react differently. But your doctor or your endocrinologist is the person who should give you that advice. Personally I don't think people should change their diets at all until the testing is completed.

If you search the forum there are lots of threads about pregnancy. I suggest you wait 6 months before going for it. That gives your body some time to heal and store nutrients it will need. Some women report their celiac symptoms decrease temporarily during pregnancy, but start back up afterwards. So that is something to read up on. You also should check into breast feeding timelines and introduction of gluten. It may be that the rates of celiac are related to the age at introduction of gluten.

That's a scary thought - the lack of an accurate result in the best of cases. Causes me to wonder what the average amount of endo's have before getting an accurate result. Of course the tough thing to know is what an accurate result is. I'm stressing more about fasting and my blood sugar than I am about the endo itself...and just the idea of having to go through this more than once freaks me out a bit!

0

Share this post


Link to post
Share on other sites

Hi Sarah,

It is better for the GI to take multiple biopsy samples during the endoscopy. 5 to 8 is not bad. Sometimes they only take one biopsy sample and sometimes none. I suggest you talk to the GI before hand and make sure that he knows you are expecting testing for celiac disease and multiple biopsy samples are ok. Some GI's aren't up to speed on the latest guidelines for celiac disease testing, and sometimes communication between the primary physician and the GI are not perfect. So taking a little time to talk to the GI ahead of time can help.

0

Share this post


Link to post
Share on other sites

Hi Sarah,

It is better for the GI to take multiple biopsy samples during the endoscopy. 5 to 8 is not bad. Sometimes they only take one biopsy sample and sometimes none. I suggest you talk to the GI before hand and make sure that he knows you are expecting testing for celiac disease and multiple biopsy samples are ok. Some GI's aren't up to speed on the latest guidelines for celiac disease testing, and sometimes communication between the primary physician and the GI are not perfect. So taking a little time to talk to the GI ahead of time can help.

I will do that! Thanks! How many biopsy samples are usually taken during the endo?

0

Share this post


Link to post
Share on other sites

Hi Sarah,

Did you have the blood panel done? I didn't seem to see that. Knowing you want to get pregnant, I would personally want to be off gluten immediately. if you have a positive blood panel, I don't see the harm in going off. Good luck!

-Megan

0

Share this post


Link to post
Share on other sites

As regards the "how much gluten/time is needed for a challenge issue, this is the way I see it and people's mileage will vary.

There doesn't seem to be an agreed upon amount of gluten or time frame by "the experts". In looking for the latest recommendations, I see studies from the mid 2000's, touting the 2-4 slices of bread a day for a month or 2, and this newer one that involved 20 participants that concluded that less gluten/time was sufficient.

http://gut.bmj.com/c...302196.abstract

Just from reading here of different folk's experiences for the last 7 or 8 years, the response to the challenge seems to vary about as much as all of our individual responses to the disease and the diet itself. I've seen people who follow the gluten-free diet after a diagnosis, go in for a recheck and are still positive on the bloods or biopsy. Others struggle through a challenge of at least 2 months, and still fail to get a positive test result despite horrible symptoms when they eat the slightest amount of gluten.

At this point, and it will most likely change as more information/studies come in, all we can do is put what we know so far out there and then people need to make the decision that works best/feels best for them. (and hopefully with the guidance of a realistic doctor) Personally, I think there is so much still not known about Celiac, gluten intolerance, etc. that it is impossible, at least for me, to give specific directives on this issue.

0

Share this post


Link to post
Share on other sites

I sure wouldn't. You seem to be getting plenty & as more research comes out, more Drs are recommending less gluten than 2 slices of bread anyway. Some are 1/2 slice/day & one oft-quoted celiac center is saying a single cracker/day.

I think, if I were new to this forum, I would trust a Celiac research facility over the word of some guy posting on an internet forum. Also, a doctor is more likely to read info from a medical center than posts on an internet forum. Univ of Chicago has a lot of info on thier site and it is easy to read. That is why I often post links to it.

0

Share this post


Link to post
Share on other sites

As regards the "how much gluten/time is needed for a challenge issue, this is the way I see it and people's mileage will vary.

There doesn't seem to be an agreed upon amount of gluten or time frame by "the experts". In looking for the latest recommendations, I see studies from the mid 2000's, touting the 2-4 slices of bread a day for a month or 2, and this newer one that involved 20 participants that concluded that less gluten/time was sufficient.

http://gut.bmj.com/c...302196.abstract

Just from reading here of different folk's experiences for the last 7 or 8 years, the response to the challenge seems to vary about as much as all of our individual responses to the disease and the diet itself. I've seen people who follow the gluten-free diet after a diagnosis, go in for a recheck and are still positive on the bloods or biopsy. Others struggle through a challenge of at least 2 months, and still fail to get a positive test result despite horrible symptoms when they eat the slightest amount of gluten.

At this point, and it will most likely change as more information/studies come in, all we can do is put what we know so far out there and then people need to make the decision that works best/feels best for them. (and hopefully with the guidance of a realistic doctor) Personally, I think there is so much still not known about Celiac, gluten intolerance, etc. that it is impossible, at least for me, to give specific directives on this issue.

Well said Patti. If there is one certainty in Celiac Disease it is that we all present, test and respond to a the removal of gluten differently.

Hang in there Sarah - if you haven't had a full celiac panel done - have your doctor order now. Meg was right - possitive blood work can help answer your questions.

Should all tests be negative - still remove ALL sources of gluten for at least three months - six is better as elimination is the only test for non-celiac gluten intolerance which shares many symptoms with celiac disease.

0

Share this post


Link to post
Share on other sites

Hi Sarah,

Did you have the blood panel done? I didn't seem to see that. Knowing you want to get pregnant, I would personally want to be off gluten immediately. if you have a positive blood panel, I don't see the harm in going off. Good luck!

-Megan

Hi Megan-

I did have blood work done...twice, although I am not sure if it was a complete panel or not as my doctors never have me the specific numbers...they just told me I was "negative" for the antibody.

It was when I went to a GI doctor with my symptoms who told me that with my symptoms and underlying issues (Type 1 Diabetes AND vitiligo) that she was not convinced I did not have celiac and wanted to do the endoscopy...she even intimated that perhaps a complete true panel of celiac was not done. Suffice it to say, it was not until I went to her that I actually felt like a doctor was truly listening to me and doing something to help me.

0

Share this post


Link to post
Share on other sites

I think, if I were new to this forum, I would trust a Celiac research facility over the word of some guy posting on an internet forum. Also, a doctor is more likely to read info from a medical center than posts on an internet forum. Univ of Chicago has a lot of info on thier site and it is easy to read. That is why I often post links to it.

Well that's a bit off-topic & curiously defensive.

Someone posted that "often ppl say 2 slices/day" & I add the single cracker quote from your fav site & that's a bad thing?

(Sarah had asked whether we'd "recommend amping up the ingestion of gluten before the test" after having explained that she's never been gluten-free - it's not a "re-introducing gluten" situation - it's a "don't stop eating gluten yet" situation.)

0

Share this post


Link to post
Share on other sites

Sorry. I thought I had put this link on here earlier.

http://www.curecelia...-celiac-disease

"How much gluten should be consumed prior to being screened for celiac disease?

It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test or biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional."

0

Share this post


Link to post
Share on other sites

...

Don't know how normal this experience is?? I feel like this gluten challenge should be more unpleasant.

I think it's safe to say it'd be more unpleasant if you were re-introducing gluten after feeling increasingly healthier during weeks or months 100% gluten-free. (Slight assumption in there on it being celiac)

You did say you never really went gluten-free, right? That'd be why it's not particularly unpleasant.

1

Share this post


Link to post
Share on other sites

I think it's safe to say it'd be more unpleasant if you were re-introducing gluten after feeling increasingly healthier during weeks or months 100% gluten-free. (Slight assumption in there on it being celiac)

You did say you never really went gluten-free, right? That'd be why it's not particularly unpleasant.

Yes, I have not gone completely gluten free yet....so I guess that makes sense.

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
      104,672
    • Total Posts
      921,690
  • Topics

  • Posts

    • I too have heart palps, flutters, skips whatever you want to call them. Ecg shows nothing. I was told by my doctor it is due to my low iron which is due to celiac. They pretty much went away after being gluten-free. But occasionally do come back. I've actually been having them for the past 3 days. But I was glutened with really severe reaction about a week ago so not sure if its due to that. Or if iron is low right now. I am on supplements but it still goes up and down. I hear you about doctors. It seems if you don't do research yourself or ask questions they don't say or do or test for anything. 
    • For a number of years pre diagnosis I had irregular heartbeats - anything from a fluttering type thing to seemingly skipping one or more beats to rapid beats to something like a short drum riff. I had multiple ECG's which didn't find anything odd. It never did it when I was at the doctors or getting the ECG's. Sometimes it seemed to pound very hard & rapid, at these times I discovered if I just laid down flat on my back, it would restore normal rhythm almost instantly. These things happened at random whether I was at rest, sitting, standing, running or working hard. It was always short lived -- lasting only 1 to several seconds, perhaps the longest was close to a minute. I too have little faith in docs as I've had my share of being blown off, to misdiagnoses. The whole heart thing quit after I had been gluten-free for a while but if I get glutened, it returns.
    • My daughter had the HPV Vaccine last year. It was administered in three doses in April 2015, May 2015, and August 2015. Immediately after the third dose, she started having weird symptoms such has headaches, irritability, and a general feeling of being unwell (which she never had before). About three months later she started having gastro symptoms, most notably constant nausea. For several months we tried to figure out what was wrong and none of the doctors knew. After seeing many doctors and having a battery of tests, she was finally diagnosed with Celiac in August 2016. Her intestinal damage was a 3b Marsh score. No one else in our immediate or extended family has Celiac (myself and my other daughter were tested and are negative). No one else has symptoms or any indication that they could have Celiac. I feel like my daughter could have gone her whole life without being triggered and I'm feeling very guilty for making her get this controversial vaccine. I have done a lot of research and there seems to be conflicting studies regarding vaccines and autoimmune diseases. Some say there is no link, while others say there is a possible link, but it cannot be proven at this time. No one seems to know for sure what triggers Celiac...could it be vaccines? I'm wondering if anyone else feels that their Celiac Disease was triggered by a vaccine?  
    • Here is an article, albeit short, about Myocarditis and Celiac disease.  I have read before about a connection between the two and A-Fib is another one that can happen with undiagnosed Celiac. From one over-thinker to another......its the inflammation thing, along with maybe some genetic components to it.  I can't remember how long you have been gluten-free but it can take awhile for things to settle down, especially if your thyroid is wonky also.  I have Celiac and Hashi's so feel your pain, even though I have not had any cardiac involvement.  Some doctors really suck. I have a lifetime of bad with them so do not go that often, only when I have to and am leery about seeing any new ones. I am so done with that attitude of theirs. I think you need to find someone who has knowledge of Celiac and it's related conditions and who actually listens to the patient. That might be harder than finding a needle in a haystack but I wish you luck! 
      https://www.ncbi.nlm.nih.gov/pubmed/12045166
    • Older people often show clinically atypical symptoms of celiac disease, which can delay diagnosis. View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,670
    • Most Online
      3,093

    Newest Member
    jelefr
    Joined