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A friend at work brought in some articles which appeared in the newspaper and it was all about gluten intolerance and how in the majority of cases these people were also anemic or had very low iron stores as well as lethargy.

My doctor didn't automatically test me for gluten intolerance and it was much later down the track that this test was performed. It was so easy too. A simple blood test.

I always ate a very healthy diet and did wonder how i became so low in a variety of vitamins and minerals. It appears it is all linked to gluten intolerance. A number of people did mention this when i first came to this board, but i didn't know anything much about it and as i ate a good diet, never thought i'd be a candidate. The newspaper article goes on to say how there are so many people out there who have no idea that they are gluten intolerant. Extreme cases of inolerance end up as Coeliacs Disease, but others can suffer intolerance to gluten and not have the extreme side effects. I would simply get a bit of bloating and feeling a bit uncomfortable around my middle area, there were times i did have irritable bowel, but put that down to stress.

I am trying to exclude as many gluten products as possible, but it does get difficult. My supermarket has a healthfood section which does sell a lot of gluten free stuff. I do like eating bread toasted for breakfast or sandwiches for lunch at work, but the gluten free breads don't taste the best. So i'm slowly consuming the few things i still have in my pantry and each time i have to buy something new or replace something i've finished off i will make a better effort to make certain it's gluten free.

So for anybody out there having difficulties working out why they are anemic or why they can't get their iron stores to stop dropping or even why they can't raise their iron stores, i would seriously get a blood test to check for a gluten intolerance. That's not to say something entirely different isn't causing your particular situation, but at least a gluten test is easy to perform.

Gluten is found in grains such as wheat, rye, barley and even some people will suffer from oats also.
Hi Audrey,

If it were me, I would clarify a few things with your doctor about the blood tests that he did. I have celiac and have been very anemic for 6 years (they just figured out the celiac over the past few months). I also had relatively few GI "symptoms."

If your blood tests came back high (I'm assuming the doctor did antibody tests such as tissue transglutamase, IgG, IgA) then the next step is to have a biopsy of your small bowel (an "upper endoscopy"). This step will help determine if there is damage to the intestine causing your body to not be able to absorb nutrients.

It's important to note that there is a difference between celiac and gluten intollerance, but it is *not* how bad your intestinal symptoms are. It is whether or not there is actual damage to your intestine, causing malabsorbtion. (People can have severe GI symptoms with lactose intollerance, but it doesn't damage the intestine and cause malabsorbtion. Same thing with gluten intollerance.)

If you're anemic and low on other vitamins and minerals (as I was, despite eating a great diet) and have high antibody results with a celiac panel, you should see a knowledgable GI doctor about a biopsy. But this should be done *before* you completely eliminate gluten, or the test results could be invalid, since the intestine begins to heal quickly.

Finally, if you do have celiac (and it sounds like you might!) you need to eliminate *all* gluten, not just reduce it, because your intestine will continue to be damaged.

I'd be happy to answer any questions.

Stephanie

P.S. You're right about GF bread--generally yuck! There is a mix, available at Whole Foods, I think it's Gluten Free Pantry, that has a pretty tasty white bread (though I prefer whole grain, I haven't found one yet). A key to GF bread is to freeze it very soon (put individual slices in the freezer and take them out as necessary). It goes stale almost instantly! (Toasting does help.)
Hi Steph, thanks for your informative advice :)

Yes my doctor ordered an Anti-gliadin IgA Abs, tTG IgA, IgG, Anti-endomysial IgA, IgG, IgM. I never knew what any of that was so i asked for a gluten test and the doctor who writes out my pathology requests said that that was the gluten test. Silly me :P anyway, i guess most of the above would cover for gluten intolerance, not that i know what any of it stands for.

The cut off figure is 15 with my lab and i got an 18. So i guess i'm not intolerant in the extreme, but i can't rule out that it hasn't affected me.

Nobody has suggested the biopsy of the small bowel, but my treating doctor has referred me to another doctor for my thyroid and this new doctor feels that the lack of vitamins/minerals stems from the bowel area. This new doctor has organised a whole bunch of tests. I have already done a saliva test, stool test, ultra sound of my thyroid and when next i visit he will do a metabolic rate test and i think there are other things he will organise too.

I know i have to get off all things gluten and it's going to be an extremely difficult thing, especially at the start. I rarely eat pasta so that wont be hard, even though you can buy gluten free pasta. I mostly prefer brown rice and i love potatoes too. The difficult part will be fresh bread and the odd biscuit or pastry or cake.

For now i will continue with my normal diet until i go back to get my test results. He said the stool test in particular will tell us about a lot of things. I'll see what he recommends and i'll mention the biopsy.

Imagine having the job testing the stool tests that come into the lab!! Not something i could imagine having as an occupation :D
Audrey, it was my impression from the literature that I've read that you will only get vitamin/mineral deficiencies if you have full-on celiac. If you are *just* intolerant, you may have lots of side effects from gluten but you won't get the destruction of the villi in the small intestine and, therefore, no malabsorption.

If your celiac blood tests were positive (anything outside the normal range) then you probably need to have the small intestine biopsy to see if damage has occurred. If it has not, then you can't blame this for your failure to absorb.
Audrey--Yes, it is the ~damage~ to the lining of the intestines (from gluten) that causes an inability to absorb nutrients. You should follow through with the sm bowel biopsy. You need to see a good GI doctor too, they are well versed in this area.

Audrey, this is an AI disease and you already have one, so you are at a greater risk for another. This makes it more important to have the proper testing completed.

I had to do the blood occult test and I couldn't imagine anyone working with that either OMG! But I'm greatful that they do. FLFLOWERGIRL:)
Thanks Christine and Flowergirl - think it might be best to stick to the same diet for now and then when i go in to find out my results i can take it from there depending what this new doctor says. He could have simply started me off on meds right away, but the fact that he is willing to be thorough is a good thing. Will see what happens at the next visit.
I suffer from many of the same symptoms of Gluten intolerance, and I thought it was IBS or stress at first, but I realized it was MUCH more like celiac disease, which I'd never heard of until reading these boards. My mother is allergic to gluten and has thyroid problems, and I didn't realize these AI problems were inherited. I didn't go through any tests, just changed to a gluten free diet over the last few weeks. INSTANT DIFFERENCE noticed within a few weeks. It is really hard to stick to it, but search online for groceries also. There are a lot of gluten free webistes, I found some good alternative ceraels, breads, cookies etc... good luck everyone!
I would encourage anyone who thinks they might have celiac disease to get all the testing before they go on a GF diet. Going GF may (in some people) quickly reduce the antibodies in your blood--the intestine takes longer to heal, but w/o antibodies, a lot of drs won't do a biopsy. While reducing the antibodies is a *good* thing, if doctors don't see evidence on the tests, they won't diagnose celiac. It is true that you will feel better, with or without a diagnosis (if gluten is your problem), but unfortunately, doctors take "biopsy confirmed" celiac much more seriously.

(When I was going through the testing process, my antibody levels all came back off the charts (e.g. > 450, > 250, they stopped counting!) and I was giving a family history to a pediatrician we hadn't seen before and I mentioned I was "about the be diagnosed with celiac" (I hadn't had the biopsy yet) and the doctor went off on this long spiel about how if there wasn't a positive biopsy, it's not celiac, and you should just eat gluten etc etc.! My biopsy also hame back as Marsh III (celiac is rated on a I-IV scale for severity), but I just hadn't had it yet! It's strange how some doctor's will pooh pooh things that they haven't confirmed. Who cares if someone eliminates gluten, as long as it makes them feel better? But too many doctors do care.)

Good luck and let us know how all the testing goes.

Stephanie
I saw a gastroenterologist to help determine the cause of my anemia. I was 48 at the time and because only a few years from 50 when they recommended doing a colonoscopy anyway, he said it would be good to do a colonoscopy now to see if there was any loss of blood or abnormailities and he also did an endoscopy and the biopsy for Celiac Disease. There was nothing abnormal and I did not test positive for Celiac Disease, so I still don't know the cause of my anemia. But just wanted to say I think it is common when someone has anemia due to an unknown cause to see a gastroenterologist to evaluate possible gastro-intestinal causes, including celiac.
Hi Audrey,

I had the 4 basic blood tests for celiac (I think it was 4) and I was negative for all but one of the tests. Doctor did a small bowel biopsy and it was negative. Don't quote me on this, but I think he said that blood tests could be positive, but if your biopsy was negative then it definitely isn't celiac - basically, everything rides on the biopsy. Does that sound right to anyone?
Audrey,
What is the test for gluten intolerance?? Do you have to be consuming gluten?? I have been on gluten free diet for about 5 weeks, feel no better yet. I had capsule endoscopy, results- flattened villa, erosions seen. Had blood work, small bowel biospy, negative. I have a malabsorption problem which dr. can not find out cause. Could gluten intolerance be it?? Would this not start to resolve after being on the diet this long ( and I am following exactly). Any answers anyone???
tired47 - i don't have that much knowledge on gluten intolerance/celiacs etc. Have you read the other 2 pages of this thread? as Christine and Steph have given some good insight into this problem which might be of value to you too.

All i did was the basic blood test as outligned in my earlier post. My result didn't come back way out, but apparently even being "slightly" gluten intolerant can cause damage to the small intestine, not whether you feel any major symptoms or not.

I will be pursuing this further with my doctor when i get my test results in another 2 weeks. Hopefully i'll get some more answers on what further tests to do.

I don't believe it's a good idea to go off gluten foods whilst further testing is being lined up. You want them to get a correct reading and not a false one.
Yup, my experience pretty much tracks with everyone elses. I was positive for a blood test, as was my mother. (I should note here that apparently there IS a strong hereditary component with Celiacs so if you have a family member who has it, it is likely that you do.) Well, when I was referred to the GI doctor, he said 1) do NOT modifiy your diet until you get the biopsy (which of course, my mother did and probably served no purpose whatsoever to do) and 2) the biopsy is THE definitive test for Celiacs. I had the biopsy and came back negative for Celiacs so I told my mom to stop that diet as it probably is just depriving her of her favorite foods for no reason. And I suggested if she was concerned about it to get the biopsy. (Ironically, this is the kind of advice my mother gives me all the time.)

Well, the next time she was tempted with birthday cake, she seemed to take my advice to heart. ;)

The diet is SO stringent and difficult, you really want to be sure by the biopsy. I read somewhere that some people with Celiacs even have their own toaster so they don't cross-contaminate. Also, many medications have gluten and it's just a big headache if you don't need to follow the diet. I think many gluten intolerance symptoms also mimic lactose intolerance so those should be explored. And I don't know about you all, but the iron supplements and all the things I take for my various other "issues" (like BCP, fish oil, glucosamine, Vit D) plus the stress of my poor health really wreck my stomach! It seems like IBS in my case. :(

What I wouldn't give for one day without having to take anything or have the worry!
ChickieLou - Heaven forbid i should be lactose intolerant!!!! The only time i use milk is in my tea and coffee and i'm not a big cheese eater. I prefer full on natural yogurt. I don't even like the sweet yogurts with the fruit in them. There was a time i wouldn't touch natural yogurt if my life depended on it, but now i'm addicted to it and would choose it over ice cream. Now that's bad!!

I don't seem to have a set pattern of symptoms occur like some people do after eating foods containing gluten or dairy. I seem to simply get bloated when i eat a full, decent sized meal. I think my problem is in the enzymes/digestion department. When i have about 5 or 6 small meals a day my stomach doesn't bloat and i feel so much better. I did buy a bottle of digestive enzyme capsules but keep forgetting to take them. The packaging doesn't state whether they are to be taken before or after a meal. When i did remember to take them, i was taking them after, but not sure if that's correct.

I know how you feel about all the different med's etc. It does get tiring having your life and your diet revolve around health issues. Hopefully one day we will all be able to post our success stories on this board :)
I feel your pain Audrey. I have alot of those same symptoms. I like to say I'm a "lactophobe" because sometimes I will eat yogurt or cottage cheese and have absolutely no problem. I'll eat the same breakfast next day and it will wreck me. So I start to fret before I take a bite of anything. Or I will buy yogurt and then watch it go bad in my fridge because "I just can't chance it today". I think you might be on to something with the enzymes. This has been one of my suspicions for a while, but I guess I wanted to find an iron I could tolerate first, which I think I have done now. So I might try the enzymes too.

In a way, I was dismayed when I came back negative for Celiacs because it would have answered a whole lot of questions.
Here's what the research I've done has turned up, including my discussions with my GI dr.,.

(1) Antibodies show there is a reaction to something. There are several antibodies they look at in celiac (different dr's do different tests). The antigliadin antibodies show that your body is producing antibodies to gluten--this could show a gluten intollerance. Anti-transglutamase antibodies show an autoimmune reaction in the intestine. I forget what the antiendomesial (sp?) antibodies show... I didn't have that test done.

(2) The biopsy confirms celiac, true, BUT... You can have early stages with high levels of antibodies but no obvious antestinal damage yet. It's at this point that different doctors and patients make different choices. Some people choose to eliminate gluten now (why bother damaging your intestine if you don't have to? is the reasoning), others choose to continue eating gluten until signs of damage are found (why give up yummy gluten if there's no damage yet? is the reasoning here.) If you're in the first group, there's the stigma with some doctors of having "self-diagnosed" celiac. In the second group, you should continue to have some follow up, either when symptoms get worse, or as discussed with your doctor. Just because you don't have damage now, doesn't mean you won't ever.

The comparison I have is that I just found out my thyroid antibodies are elevated. My thyroid function is still within the normal range (just barely though), so I don't know yet if they'll treat it. Because they don't know the "trigger" for thyroid autoimmune problems, there's nothing to do except wait for my thyroid to fail (we don't know yet if it will be hyper or hypo, but it will happen). With celiac, if you have the antibodies, you can either wait for damage to occur (and have an "official" celiac diagnosis) or you can remove the trigger, gluten, since they know what it is. (It's the only autoimmune disorder with a known trigger.) No one can tell you what the best choice is, but you should be aware of the options.

Hope this helps clarify things a little. Let me know if you have more questions.

Stephanie

P.S. I think there was also a question about how eliminating gluten can affect the testing. Everything I have read says not to eliminate gluten in the testing phase. For some people, the antibodies can drop *very* quickly in the absence of gluten (other people take much longer, I have not figured out why there is a difference). Since you don't know which you'll be, you should definitely be consuming gluten when you have the antibody blood tests.

The biopsy is a little different. My antibody levels came back off the charts high, and the GI recommended eliminating or reducing gluten asap, even though the biopsy wasn't scheduled for three weeks. I gradually eliminated it over the course of those weeks, and my biopsy was still positive, but my damage was also pretty severe. The intestine does heal, and if you have minor damage and are GF for a while before the biopsy, this could cause incorrect results. On the other hand, if the damage is pretty bad, it can take up to 1-2 years for the intestine to heal completely.
Hi Steph, thank you so much for going to so much effort to explain things so well and in plain English :) I'm sure it will be of help to many others, including myself.

ChickieLou - the weird thing with dairy is that my mother has problems with dairy if she uses milk bought from the supermarket, but not fresh milk straight from the cow. My parents often get their milk straight from a dairy farm which some friends own. This makes my mother wonder whether the processing of milk is the problem and not simply the milk itself. Who knows what preservatives they add in the factory where the milk is processed.





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