Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Rate this topic

Recommended Posts

I have been treated by many doctors, main stream and alternative health professionals, for almost 20 years (and I'm only 33) and celiac disease was never mentioned until 1998, the naturopath I was seeing at the time suggested a celiac "saliva" test. I haven't seen anything like that mentioned here yet and wondered if anyone knew about this specific test? I just chewed, or sucked, on this small cotton tube for a few minutes to get it saturated with my saliva and popped it in a vial and sent it off to the lab.

It did not come back positive, but it was not negative either, it was a low positive. As a solution my naturopath decided to treat me with NAET for gluten as well as each gluten containing grain individually. Yeah, that really worked!

I'm sort of in a difficult position because I haven't had any testing done for celiac, other than the saliva test, but I have not eaten wheat off and on for over 10 years because it makes me so sick, and I became completely gluten free (except for a few mistakes) 2 years ago. Any suggestions??

Share this post


Link to post
Share on other sites

Since you've been gluten-free for 2 years there's really no test you can take at this point. I dont know anything about a saliva test. The only tests for diagnosing Celiac are bloodtests and biopsy. The stool test (Enterolab) can diagnose a gluten intolerance but not specifiaclly Celiac.

Since you've been on the diet have you ntoiced improvement? Are you still sick? When you accidently had gluten did your symptoms return? Lots of people are self-diagnosed by positive response to diet alone....tests arent really necessary if you feel good w/out gluten.

Share this post


Link to post
Share on other sites
Since you've been gluten-free for 2 years there's really no test you can take at this point. I dont know anything about a saliva test. The only tests for diagnosing Celiac are bloodtests and biopsy. The stool test (Enterolab) can diagnose a gluten intolerance but not specifiaclly Celiac.

Since you've been on the diet have you ntoiced improvement? Are you still sick? When you accidently had gluten did your symptoms return? Lots of people are self-diagnosed by positive response to diet alone....tests arent really necessary if you feel good w/out gluten.

Thanks for your reply Rachel-24. I definitely feel better not eating wheat compared to when I do eat wheat. When I eat wheat, or oats, I get really sick. But I am still sick, due to multiple food allergies in addition to the wheat/oat intolerance, as well as other health issues on top of that. I guess it's a question of whether or not a diagnosis is necessary, or helpful to me at this point and I think you answered that question.

Share this post


Link to post
Share on other sites
What other foods do you avoid? Do you notice a difference when you stay away from everything you know you are sensitive to?

Hi lonewolf, the big ones for me to avoid are wheat, dairy, sugar, corn, and soy-- but even nuts, fruits, all grains, and some vegetables bother me to some degree. Basically the process of eating is unpleasant all together because I am so highly sensitive to everything and my intestinal tract is so damaged. I don't think it's possible for me to stay away from everything I am sensitive to because that would mean I would have nothing to eat, so I haven't been able to figure that out- what to avoid in order to feel better?- I haven't experienced that yet. Although I do know it's night and day between eating those big allergens and not eating them. If that makes sense?

Share this post


Link to post
Share on other sites

Julie, I know what you mean about the big allergens causing more problems. How long have you been avoiding everything? I'm just wondering if you've gotten any better strictly avoiding the big offenders or have you not been doing that 100%? I just realized dairy and soy to be problems for me 2 weeks ago.

Share this post


Link to post
Share on other sites
Julie, I know what you mean about the big allergens causing more problems. How long have you been avoiding everything? I'm just wondering if you've gotten any better strictly avoiding the big offenders or have you not been doing that 100%? I just realized dairy and soy to be problems for me 2 weeks ago.

Hi Rachel- I have been doing some type of elimination diet the last 10-12 years or so. Seriously staying away from my main "big" offenders has been about the last 6 years, but not 100% of the time, I will have an occassional indulgence. I have been really strict about the wheat/gluten the last 2 years. I am starting on the road to being really strict with dairy, sugar should follow, it is really challenging! Suddenly you find yourself with not a lot to eat. But actually after talking this through I do see that feeling good might be a possibility if I just clear out all of those allergens and stick with it. Thanks Rachel and everyone for this sounding board!

I commented about your casein/dairy issue in another topic post. Dairy is difficult to restrict, more so than gluten I find. But it can be done. Just try to stay positive and experiment with different food choices. It gets easier with time.

Share this post


Link to post
Share on other sites
the big ones for me to avoid are wheat, dairy, sugar, corn, and soy-- but even nuts, fruits, all grains, and some vegetables bother me to some degree.

Julie,

I've been reading this thread and if going gluten-free hasn't been helping with the rest of these issues, then I'd start looking for other solutions.

Of the foods you're avoiding.. I'd have to say that corn is the most difficult one to make certain that you're completely avoiding it. There is a group on Delphi called Avoiding Corn that has some really good information on avoiding it from people who have many symptoms similar to yours.

I don't know if you've had any allergy tests to denote which foods you're really allergic to, and those which you might just be sensitive, but..

The wheat, sugar, corn are all grasses, as well as oats, barley and most other grains, so you may find you cross-react. Buckwheat is a different beast and should be ok though if you can tolerate it.

If you're allergic to corn that could cause a ton of dairy issues as well. Most vitamins put into milk are stored in a corn oil, not to mention other "corn" in dairy products. But dairy is a common allergen, so who knows.

Lots of fruits and some vegetables are coated with corn-derived waxes and oils and preservatives to make them stay fresher and last longer in stores. So that could be part of your issues as well.

Soy is a bean (also peanut).

I don't know what oil you use for cooking, but a lot of cooking oils also have corn-stablizers or preservatives.

So if you're being really careful with everything and still having problems, you may want to look at "sister-foods" to the foods you're currently having issues with. Its not uncommon to have a cross-reaction.

V - Allergic to Corn. Avoiding cranberries, almonds, eggs, milk, yeast (brewers and bakers), mushrooms, kidney and pinto beans (and almost everything else in that family), chili pepper (and currently all in that family), black and white pepper.

Share this post


Link to post
Share on other sites
Julie,

I've been reading this thread and if going gluten-free hasn't been helping with the rest of these issues, then I'd start looking for other solutions.

Of the foods you're avoiding.. I'd have to say that corn is the most difficult one to make certain that you're completely avoiding it. There is a group on Delphi called Avoiding Corn that has some really good information on avoiding it from people who have many symptoms similar to yours.

I don't know if you've had any allergy tests to denote which foods you're really allergic to, and those which you might just be sensitive, but..

The wheat, sugar, corn are all grasses, as well as oats, barley and most other grains, so you may find you cross-react. Buckwheat is a different beast and should be ok though if you can tolerate it.

If you're allergic to corn that could cause a ton of dairy issues as well. Most vitamins put into milk are stored in a corn oil, not to mention other "corn" in dairy products. But dairy is a common allergen, so who knows.

Lots of fruits and some vegetables are coated with corn-derived waxes and oils and preservatives to make them stay fresher and last longer in stores. So that could be part of your issues as well.

Soy is a bean (also peanut).

I don't know what oil you use for cooking, but a lot of cooking oils also have corn-stablizers or preservatives.

So if you're being really careful with everything and still having problems, you may want to look at "sister-foods" to the foods you're currently having issues with. Its not uncommon to have a cross-reaction.

V - Allergic to Corn. Avoiding cranberries, almonds, eggs, milk, yeast (brewers and bakers), mushrooms, kidney and pinto beans (and almost everything else in that family), chili pepper (and currently all in that family), black and white pepper.

Simply V, thanks for this reply- lots of good information and suggestions. I've had a blood panel allergy test, but that has been some years ago. I have leaky gut, and have had for many years, so whatever I am eating at the time I eventually develop an intolerance to. I try really hard to do a rotation diet but there aren't many things I can eat on a regular basis so it becomes difficult to keep the variety up. I had NAET treatments for all of my allergies and intolerances for 4 years and that didn't help at all.

The corn issue is interesting. I really stay away from dairy, other than an occasional indulgence in cheese (maybe 3 or 4 times a year). I only use olive oil or sunflower oil, I get it at the health food store so I'm not sure if it has the corn stabilizers you mentioned. I also only eat organic produce- do they have the corn waxes as well? I read that xanthum gum is a corn derivative and I just discovered it's in so many gluten free products.

Share this post


Link to post
Share on other sites
Simply V, thanks for this reply- lots of good information and suggestions. I've had a blood panel allergy test, but that has been some years ago. I have leaky gut, and have had for many years, so whatever I am eating at the time I eventually develop an intolerance to. I try really hard to do a rotation diet but there aren't many things I can eat on a regular basis so it becomes difficult to keep the variety up. I had NAET treatments for all of my allergies and intolerances for 4 years and that didn't help at all.

The corn issue is interesting. I really stay away from dairy, other than an occasional indulgence in cheese (maybe 3 or 4 times a year). I only use olive oil or sunflower oil, I get it at the health food store so I'm not sure if it has the corn stabilizers you mentioned. I also only eat organic produce- do they have the corn waxes as well? I read that xanthum gum is a corn derivative and I just discovered it's in so many gluten free products.

If you haven't been to http://forums.delphiforums.com/AvoidingCorn I would recommend it. Its a very good discussion site for people with corn allergies or intolerances. I'd be in a world of hurt if it wasn't for finding that site little over a year ago.

Organic produce is the way to go, but some of the fruits do still have coatings. I know one of the women on the delphi board can't tolerate anything that she can't peel.

Xanthan gum is made using corn. Several people on the delphi board have researched it and there is not a manufacture of Xanthan gum in the United States (and probably North America) that doesn't use corn to make Xanthan gum. They were trying to find a corn-free version for their own baking uses.

Anyway.. I'm side tracking the thread. If you have more questions, about corn or whatever.. email me or come to the delphi site. :)

Share this post


Link to post
Share on other sites
If you haven't been to http://forums.delphiforums.com/AvoidingCorn I would recommend it. Its a very good discussion site for people with corn allergies or intolerances. I'd be in a world of hurt if it wasn't for finding that site little over a year ago.

Organic produce is the way to go, but some of the fruits do still have coatings. I know one of the women on the delphi board can't tolerate anything that she can't peel.

Xanthan gum is made using corn. Several people on the delphi board have researched it and there is not a manufacture of Xanthan gum in the United States (and probably North America) that doesn't use corn to make Xanthan gum. They were trying to find a corn-free version for their own baking uses.

Anyway.. I'm side tracking the thread. If you have more questions, about corn or whatever.. email me or come to the delphi site. :)

Simply V, I don't know if you are still around or not, but I wanted to thank you for replying to my original thread and bringing corn allergies to my attention. I am slowly working to clear corn out of my diet and my supplements and toilletries by researching and gathering information while looking over the delphi site and other corn allergy websites. I didn't realize how many things I was getting corn exposure from.

I found an interesting post at the Avoiding Corn forum with a link addressing rashes and food additives (one particular additive being a corn derivative). While I don't eat processed food with these additives in them (unless I am unaware of something that might be hidden in my foods from the health food stores) this link mentioned angioedema, a severe anaphylactic type hive/rash/blister skin break-out reaction, incredibly painful, that I have been suffering with every month for 4 years. Nobody that I have gone to, or anything that I have researched, knows what it is or what causes it and there isn't much you can do for it except go to the ER and get an adrenaline shot or wait it out (unless it got to the throat and then it can be fatal), each outbreak for me lasting up to 2 weeks. When I was reading the information about the additives I started put 2 and 2 together and thought if these additives can cause every kind and degree of rash/skin outbreak, one being a corn derivative, maybe the same is true for some people with all corn derivatives.

Anyway, I have nothing to lose and everything to gain if it cures my angioedema, and solves some of my other health issues, by clearing corn out.

So thanks again for being so helpful!!

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...