Doc Says I'm Gluten Intolerant... But I'm Not Sure?!

[tygwyn]

Thanks again Nora... jeez I've got a lot to learn! I've only just got my head around Thyroid and Adrenals, and now this!! Think my head might explode soon!

Appreciate your time

Yes, you had the IgG versions done too.

This way they did not *have to* do the total IgA. (which was not done in your case)

Other labs routinely do the IgA version test and the total IgA, and only do the IgG version if the total IgA is low.

But your tests had some number, and were not 0, maybe that means something too.

Anyway, celiac tests are designed or calibrated to only be positive when gut damage is severe, and are quite likely to be negative in early celiac.

[KathiSharpe]

After reading through some of the threads here, I've noticed that apparently before a biopsy you need to have been eating lots of gluten. Is that true for blood tests too? I wasn't even aware of what had gluten in it or didn't prior to the test, plus I was tested for glucose/insulin at the same time so had to fast for 12 hours prior to testing. Would this have effected the results at all?

Most people have to try really hard on purpose not to eat gluten. If you've been eating a standard diet that fairly regularly has bread, pasta, breakfast cereal, pre-packaged meats*, McDonald's, candy bars, that sort of thing - it'll show up.

Besides, if my understanding's right, if you'd gone gluten-free before any tests, and the tests showed intolerance, that makes it more likely, not less. Going gluten-free can produce a false negative; I've not heard of too many false positives for any reason.

* on the meat thing - I'm discovering that most meat you buy at the grocery store these days has gluten added to it. So I'm looking at a whole freezer full of meat that I can't eat.

Oh - make sure the supplements the doc gave you, and your meds, are gluten-free.

[tygwyn]

Thanks Kathi

Well when you look at my results, they are actually negative, but my doctor has interpreted them as positive (for GI not Celiac). Thats whats so odd.

Oh you're kidding about the meat... thats just crazy! I seriously dont have a clue what I can or cant eat at the moment - I've not long gotten back from the super market and have pretty much bought everything that had 'GLUTEN FREE' labeled on it, just so that I knew for sure!! haha

Seriously... dont have a clue! Guess I'll learn pretty fast though!

Most people have to try really hard on purpose not to eat gluten. If you've been eating a standard diet that fairly regularly has bread, pasta, breakfast cereal, pre-packaged meats*, McDonald's, candy bars, that sort of thing - it'll show up.

Besides, if my understanding's right, if you'd gone gluten-free before any tests, and the tests showed intolerance, that makes it more likely, not less. Going gluten-free can produce a false negative; I've not heard of too many false positives for any reason.

* on the meat thing - I'm discovering that most meat you buy at the grocery store these days has gluten added to it. So I'm looking at a whole freezer full of meat that I can't eat.

Oh - make sure the supplements the doc gave you, and your meds, are gluten-free.

[ang1e0251]

* on the meat thing - I'm discovering that most meat you buy at the grocery store these days has gluten added to it. So I'm looking at a whole freezer full of meat that I can't eat.

Raw meat should have no gluten. What made you think it does? Frozen chicken in parts often has broth added to it. It will say so on the package and the ingredient list will say the contents of the broth. I've never heard of other raw meat with gluten additives. Can you tell us what to look for?

[rubyred]

A few hinters about eating gluten-free-

-start out simple. Think fresh fruit, veggies, eggs, plain meat (you can season with salt and pepper or mix in with veggies, etc. Just try to avoid sauces at this time until you get a hang of it), plain fish, nuts, rice, potatoes, corn, rice cakes, beans, plain popcorn

-I might avoid a lot of the processed "gluten free" foods that you've already bought. Not saying you can never have these.....but in the very beginning, it might be best to start with natural, whole foods. I would then add in the processed foods in slowly and see if your stomach can handle them at this point

What really helped me was stripping my diet down to the basics for at least a week or two. Then you can definitely add in more things. Not sure if you have intestinal damage, but I had inflammation and this helped soooo much!

[KathiSharpe]

Raw meat should have no gluten. What made you think it does? Frozen chicken in parts often has broth added to it. It will say so on the package and the ingredient list will say the contents of the broth. I've never heard of other raw meat with gluten additives. Can you tell us what to look for?

When I go to the store tomorrow I'll look to be sure - but I'm 99% sure both (some) raw and (lots of) frozen meat has the stuff in it. Chicken, pork, and beef (plain fish AFAIK is safe)

What you're looking for is any meat that has "broth" or "tenderizer" or is "enhanced" - sometimes an ingredient list is provided, and sometimes not (sometimes it just says something like "3% broth" or something stupid like that.) You can't necessarily believe an "All Natural" label because, well, gluten is "natural" after all.

There's one major brand of chicken that does not have this - Tyson maybe? I don't want to say without checking - and the Food Lion frozen chicken I just unearthed in the freezer doesn't seem to have anything evil added. But when I was gluten-free before I actually gave away a whole chicken I'd bought (and I'm 99% sure it was fresh!) that had added gluten.

The NY strips (which came frozen) have a "ficin" tenderizer and an "enhancement of modified food starch, sodium gezundheit-ate, lemon powder, and other I'm-sure-wonderful things that Ken can eat

Ah! I know where the "fresh" comes into my brain. Aldi's pork chops. Don't know about currently but they used to contain gluten.

Say, a moderator might want to split this post and the last off into a separate thread?

[leadmeastray88]

I have never had a problem with fresh, store-bought raw meat before. Cold cuts, on the other hand, is a totally different story. I know Freybe's and Grimm's packaged meats are gluten free - it says right on the label. Those are the only ones I buy.

[tygwyn]

Thanks - thats some really good advice.

I messed up a little yesterday because I visited a couple of friends and have a drink with them. I didnt know what to say about having milk in my drink so I just went ahead with it! Am I right in thinking that milk has gluten in it (I told you I didnt have a clue!!). I bought Rice milk yesterday but thats going to take some getting used to!

I'm actually quite looking forward to getting into this now. And starting to believe that my doctor has advised me to do the right thing. I'm a very 'black and white' person, with no 'grey' areas so I generally like to be told 'yes' you have something or 'no' you dont. Seeing negative results (in my head they are) and then him interpreting them as positive, is really hard for me. I did argue the case with him and got him to explain why he believed that their positive, but I cant for the life of me remember what he said!! haha

A few hinters about eating gluten-free-

-start out simple. Think fresh fruit, veggies, eggs, plain meat (you can season with salt and pepper or mix in with veggies, etc. Just try to avoid sauces at this time until you get a hang of it), plain fish, nuts, rice, potatoes, corn, rice cakes, beans, plain popcorn

-I might avoid a lot of the processed "gluten free" foods that you've already bought. Not saying you can never have these.....but in the very beginning, it might be best to start with natural, whole foods. I would then add in the processed foods in slowly and see if your stomach can handle them at this point

What really helped me was stripping my diet down to the basics for at least a week or two. Then you can definitely add in more things. Not sure if you have intestinal damage, but I had inflammation and this helped soooo much!

[ravenwoodglass]

Thanks - thats some really good advice.

I messed up a little yesterday because I visited a couple of friends and have a drink with them. I didnt know what to say about having milk in my drink so I just went ahead with it! Am I right in thinking that milk has gluten in it (I told you I didnt have a clue!!). I bought Rice milk yesterday but thats going to take some getting used to!

I'm actually quite looking forward to getting into this now. And starting to believe that my doctor has advised me to do the right thing. I'm a very 'black and white' person, with no 'grey' areas so I generally like to be told 'yes' you have something or 'no' you dont. Seeing negative results (in my head they are) and then him interpreting them as positive, is really hard for me. I did argue the case with him and got him to explain why he believed that their positive, but I cant for the life of me remember what he said!! haha

Milk is gluten free but until you heal a bit it may be difficult for you to digest. You do have to be careful about what it is mixed with in a drink though. Not all hard liquor is gluten free as some may have gluten in the flavorings. Also a few of us are sensitive to distilled grain alcohols, not everyone but enough so you should use caution at first. Most wines are safe, woodchuck hard cider is safe and there are gluten free beers available. Watch out for malt in premade wine coolers. Those are not safe. I like to make my own wine coolers with lambrusco and 7up.

Also be aware that even though the label says it is that Rice Dream rice milk is NOT gluten free due to barley used in the processing. I use either Pacific or Wegmans rice milk but do use a bit of real milk in my coffee. If you need more protein in your diet Hemp milk is also a good choice. I really like the chocolate flavor.

[tygwyn]

Wow you're good! Thanks ever so much.

I'm guessing its the norm for someone to lose weight when they first start this, because rather than eating the wrong thing... they just dont eat! I was starving yesterday because I didnt have a clue what I could or couldnt eat! Big big learning curve!

Milk is gluten free but until you heal a bit it may be difficult for you to digest. You do have to be careful about what it is mixed with in a drink though. Not all hard liquor is gluten free as some may have gluten in the flavorings. Also a few of us are sensitive to distilled grain alcohols, not everyone but enough so you should use caution at first. Most wines are safe, woodchuck hard cider is safe and there are gluten free beers available. Watch out for malt in premade wine coolers. Those are not safe. I like to make my own wine coolers with lambrusco and 7up.

Also be aware that even though the label says it is that Rice Dream rice milk is NOT gluten free due to barley used in the processing. I use either Pacific or Wegmans rice milk but do use a bit of real milk in my coffee. If you need more protein in your diet Hemp milk is also a good choice. I really like the chocolate flavor.

[KathiSharpe]

I'm guessing its the norm for someone to lose weight when they first start this, because rather than eating the wrong thing... they just dont eat!

IMHO the easiest way to get going on the diet is not to try to sort out gluten free products so much as to sort gluten-free flour+additives (like sorghum, millet, rice flour, xanthan gum) and learn to cook for yourself. Start with bread and then progress to some sort of cookie or brownie to satisfy the sweet tooth.

Also buy a good-tasting gluten-free breakfast cereal (I adore Perky's!) because you can eat that any time.

And remember that lots of things are naturally gluten-free, like fresh fruit, eggs, fish, rice, potatoes...

All that said, it is normal for some to lose weight when they start eating gluten-free (and some will gain) - why, I'm not sure. I know for me I've lost six pounds in the three days I've been eating gluten-free, where I've been on a (non-gluten-free) diet and trying to lose weight since January and hadn't lost 6 ounces! But I'm eating MORE on gluten-free!!

[tygwyn]

I dont doubt for some that that is definitely the best way forward, but for me, who has absolutely no discipline when it comes to cooking, and very little interest too which doesnt help, it would most certainly be a recipe for me to crash and burn very early on in this journey! I have tried for many many years to get myself organised when it comes to meals, but even with a 9 year old daughter, it doesnt enter my head to think 'what shall we have for tea tonight?' and for me to prepare it. I dont know what it is, but cooking meals just doesnt enter my head... I know I know its really bad... but I'm just being honest here!

For me it is going to have to be lots of fresh fruit, veg and fish (nice and easy to cook) and then whatever else I can find that is Gluten Free.

I've just eaten Gluten Free tinned spaghetti on Gluten Free bread.... GROSS!!

I'll definitely be one of those who loses weight (although that certainly wont be a bad thing!!)

IMHO the easiest way to get going on the diet is not to try to sort out gluten free products so much as to sort gluten-free flour+additives (like sorghum, millet, rice flour, xanthan gum) and learn to cook for yourself. Start with bread and then progress to some sort of cookie or brownie to satisfy the sweet tooth.

Also buy a good-tasting gluten-free breakfast cereal (I adore Perky's!) because you can eat that any time.

And remember that lots of things are naturally gluten-free, like fresh fruit, eggs, fish, rice, potatoes...

All that said, it is normal for some to lose weight when they start eating gluten-free (and some will gain) - why, I'm not sure. I know for me I've lost six pounds in the three days I've been eating gluten-free, where I've been on a (non-gluten-free) diet and trying to lose weight since January and hadn't lost 6 ounces! But I'm eating MORE on gluten-free!!

[KathiSharpe]

I dont doubt for some that that is definitely the best way forward, but for me, who has absolutely no discipline when it comes to cooking, and very little interest too which doesnt help, it would most certainly be a recipe for me to crash and burn very early on in this journey! I have tried for many many years to get myself organised when it comes to meals, but even with a 9 year old daughter, it doesnt enter my head to think 'what shall we have for tea tonight?' and for me to prepare it.

I used to be much the same! As a consequence we did (and still do) eat out WAY too much. Not having much I can eat in a restaurant will help to curb that!

My #1 friend for cooking is actually my freezer. I have done OAMC before (once a month cooking) but it takes a whole day and leaves me exhausted for another three days after!) So I modified it to where now I'll buy one thing in bulk (hamburger, chicken, a big roast, beans) and cook it. Then I repackage as serving portions in freezer bags.

It makes mealtime easy if you can pull, say, cooked chicken, cooked rice, and cooked zucchini with onions and tomatoes out of the freezer - toss it all in the oven on medium heat for an hour and voila! I do the same with gluten-free bread, cake slices, muffins, and so on.

Just double or quadruple recipes, and freeze.

So the #2 friend is a bread machine. I don't currently own one but I'm hoping to save up the $$ to buy one! But even without, gluten-free bread is as easy to make as a cake from scratch. No kneading!

[tygwyn]

Ah... now you're talking!! Thats something that I could manage... and I actually quite like doing stuff like that. Great tip thanks!!

My #1 friend for cooking is actually my freezer. I have done OAMC before (once a month cooking) but it takes a whole day and leaves me exhausted for another three days after!) So I modified it to where now I'll buy one thing in bulk (hamburger, chicken, a big roast, beans) and cook it. Then I repackage as serving portions in freezer bags.

[Korwyn]

Ah... now you're talking!! Thats something that I could manage... and I actually quite like doing stuff like that. Great tip thanks!!

Here is another tip we use - go to your local butcher and get lots of fresh pork, chicken, beef (whatever is on sale) and spend a Saturday at the barbecue! The after you BBQ them, cut them up into portion sized pieces, date them, doublewrap them, and put them in the freezer. Cooked fish doesn't really freeze well though.

One reason I say your local butcher is that it is easier to get truly fresh meat, without any added broth, water, etc, and it is usually WAY cheaper, especially if you get a quantity of meat. Not to mention you can usually get leaner grassfed or non-hormone fed beef and pork if you are concerned about that.

Also, if you BBQ/smoke a couple whole chickens (remove the giblets ), then throw them whole into a pot afterwards and turn them into soup stock, you can freeze family or individual meal sized portions of this. Buy a bag of brown basmati or long-grain rice or a bag of quinoa. Take a portion out of the freezer, put it in a pot (or the microwave) throw some rice or quinoa into it, a handful of corn, peas, carrots, or even nothing, heat it up, and voila - 15 to 20 minutes later you have a protein rich, nutrient and vitamin rich meal! Makes a great and fast lunch at work if you have a microwave.

[Learner01]

Gluten intolerance is, to some researchers, just a case of celiac that has not gone full blown yet and instead the body went after the thyroid and other body parts first, like the brain, bones, kidneys, liver, ovaries (cysts, PCOS) etc.

Because of your other problems, the doc probably pinned you as very likely gluten intolerant, inspite of the lackluster numbers, because both thyroid auto immune disease and diabetes are associated with the same genes that cause celiac/gluten intolerance. (and they just are discovering things like this besides the statistic of an increased liklihood of them being present in the same people)

Gluten intolerance causes problems with the absorption of the B vitamins, lack of which tend to make people anxious, also with the body's use of calcium, magnesium, which can royally screw up your reproductive hormones. Once you get supplemented up and stop the auto immune reaction in your body by adhering to what diet you were meant to live on, this should make you feel much better. You will also probably end up needing your levels of thyroid hormones adjusted and make sure all your medications and supplements are gluten free.

I was diagnosed with Hashimoto's a few years back. I'm fine now. Just recently went gluten-free and then I found this messageboard. I appreciate this post! If I only knew this back then!!! If only. Wow.