• Join our community!

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

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
Sarahsmile416

Confusion About Gluten Intolerance

Rate this topic

Recommended Posts

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??

Share this post


Link to post
Share on other sites
Ads by Google:
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. :)

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!

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/

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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

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!

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.

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.

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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!

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.

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?

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

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.

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.

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.

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.

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.)

Share this post


Link to post
Share on other sites


Ads by Google:


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."

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.

  • Upvote 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.

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
      108,911
    • Total Posts
      943,460
  • Member Statistics

    • Total Members
      67,058
    • Most Online
      3,093

    Newest Member
    Foxdavfri
    Joined
  • Popular Now

  • Topics

  • Posts

    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
  • Upcoming Events