Confusion About Gluten Intolerance

[Sarahsmile416]

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??

[GFinDC]

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.

[Sarahsmile416]

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!

[GFinDC]

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/

[Sarahsmile416]

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.

[Celiac Mindwarp]

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

[Sarahsmile416]

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!

[tom]

....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.

[Sarahsmile416]

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.

[GFinDC]

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.

[Sarahsmile416]

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!

[GFinDC]

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.

[Sarahsmile416]

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?

[megsybeth]

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

[jerseyangel]

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.

Open Original Shared Link

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.

[kareng]

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.

[GottaSki]

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.

Open Original Shared Link

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.

[Sarahsmile416]

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.

[GFinDC]

Hi Sarah,

They should do at least 4 biopsy samples from different areas.

Open Original Shared Link

[tom]

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.)

[Sarahsmile416]

Hi Sarah,

They should do at least 4 biopsy samples from different areas.

Open Original Shared Link

Thanks so much for the link...that was very informative - I will share that with my doctor and make sure she does at least that!

[kareng]

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

Open Original Shared Link

"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."

[Sarahsmile416]

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

Open Original Shared Link

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

It

[tom]

...

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.

[Sarahsmile416]

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.