Doctors And Diagnosis

[Nemi555]

Hi,

I'm new on the board and very new to celiac disease! I came this way via allergies...seems that since my son was conceived and born 17 years ago (when I was 30), I developed all sorts of allergies including food allergies but I wasn't tested for them until I was 40. Not all of them showed up at the time of testing either - it seems they've been gradually showing themselves over the years. Or maybe we've just been untangling everything slowly and figuring them out!

I had a serious bout of something in the early 90's (I was experiencing chronic diarrhea alternating with constipation, nausea, couldn't lose weight, irritability, wildly irratic periods, etc) and went to Lahey Clinic where they tested me for all sorts of things (except celiac disease) and they told me I had IBS and to sit on the potty. I was furious because they were treating me like a hysterical female! I was so miserable and I knew my system was so messed up but no one was taking me very seriously. I finally went on the pill to regulate my periods and that seemed to calm everything down - at least to a manageable level for a while. Until I turned 40 anyway and then the allergies hit me full force. I was very sick and as I said above, that's when I went to an allergist and was tested for them- I'm allergic to cats, dust, mold (which transfers over to foods), grass, oak and birch trees, and 4 weeds. I now find I have an allergy to eggs and apples - my allergist tells me there are what they call concomitant and synergistic foods and eggs and apples are related to my oak allergy.

Now my son when he was small used to eat lots and lots of pasta (tortellini to be exact - he loved them!) and he would break out with vicious cankersores and complained his stomach hurt him all the time. He also had frequent ear infections. I mentioned to his ear, nose and throat doctor that I thought he had allergies but his response was "we don't like to test young kids for allergies" and went ahead and put tubes in his ears. (we didn't know what else to do so went along with the doctor)

Well, about a month and a half ago I was at my allergist's getting my shots and I mentioned those symptoms to her and she suggested he get tested for wheat allergies and celiac disease. I had never heard of it before like most people. I've been having trouble (again) since last March and I thought that I would get tested just to rule things out. Seems like I was reacting to foods but couldn't put my finger on what was causing my distress. I did discover that I'm allergic to sorbitol though. Anyway, I looked up celiac disease on the net and discovered that the only treatment for celiac disease was to eat gluten free. My son and I were game to try it and we did. Unfortunately it was before we were tested for celiac disease. My tests came back (and here I wish I had a copy of the report because I am unclear as to the correct terms) negative for the wheat sensitivity but positive for the celiac disease (it was a 24). My son's test was a week later and we had continued on the gluten free diet and of course his tests came back negative. His doctor decided to send him to the gastro doc anyway because of my results. I was actually shocked that mine came back positive as I didn't think I had any of the classic symptoms, not like my son did.

BTW we both started feeling so much better on the gluten free diet. But now we have to go back to eating it because if we're not sick the doctor won't be able to confirm the diagnosis. UGH! I'm still not sure I have it but there is something going on. I do think my son does though.

Interesting to note that my son's father may have celiac disease - he was very sick as a kid and was brought to Mass General in the early 70's and was tested for all sorts of things. They couldn't find anything but on a weird hunch the doctor wanted him to write down everything he ate...which he did faithfully and when the doc looked at the list he was shocked! He was eating at 12 years old enough for 7 adults and he was as thin as a stick! The kicker was that the doc still didn't get it because he said that all he had to do was stop eating so much! They felt that he was just pushing the food through his system because of the volume of food he was consuming! Unbelievable! He has been ultra thin most of his life - although he did gain weight after we were married and things seemed to calm down for him. He still ate a lot though. He told me the other day when we were talking about all of this that he never feels well. So I told him he ought to get tested for celiac disease. His mom is lactose intolerant, has Shogren's disease (spelled wrong), fibromyalgia and has stopped eating wheat!

Anyway, my son's initial appt with the gastro doc is on the 23rd and he said he will eat wheat (grudgingly) a few days prior to that so the doc will get a view of what's going on. Me, I'm starting to eat it again slowly as my biopsy isn't until Dec 19th and the xray of my lower intestines is on the 15th of Dec. Neither of us is looking forward to feeling unwell again and will return to the gluten free diet as soon as we can. I really want to get to the bottom of this for myself but especially for my child. I don't want him to have a lifetime of problems with no anwers.

Thanks for listening!

Cathy

[Rachel--24]

Anyway, my son's initial appt with the gastro doc is on the 23rd and he said he will eat wheat (grudgingly) a few days prior to that so the doc will get a view of what's going on.

<{POST_SNAPBACK}>

Hi,

Just so you know eating gluten just for a few days before the test most likely wont give a positive result even if your son has Celiac. Be prepared that he could have a false negative due to already starting the diet.

[Guest nini]

Why on earth can't the Dr.s accept a positive dietary response as a diagnostic tool????? Oh, let's just make them sick so that we can charge the insurance companies more money for the tests...

I'm sorry, but in my humble opinion, I think you already have your answers. Listen to your body and feed it the way it wants to be fed. If you respond well to the diet then you have your answer. I think it is cruel and unusual punishment for a medical Dr. to insist that you and your son consume something that YOU ALREADY KNOW IS MAKING YOU SICK, just to see if there is any damage done yet. IT DOESN'T MATTER if there is or isn't any damage YET, if you keep consuming gluten even for ONE MORE DAY... you are putting yourself at further risk for other complications.

You've already done blood testing, even though you had already started the diet you showed markers... THAT IS SUFFICIENT EVIDENCE to go on the diet...IMHO of course.

I admit I am very opinionated about this and obviously in the minority. But I think we give medical dr.s entirely too much credit, They have MISSED this for too long. I no longer trust them. You can put yourself on the diet without the permission of a dr.

Disclaimer: This is only my opinion and I admit I feel very strongly about it and admit that others may not agree with me. That's ok. Do what you want with it.

[Jnkmnky]

Why on earth can't the Dr.s accept a positive dietary response as a diagnostic tool????? Oh, let's just make them sick so that we can charge the insurance companies more money for the tests...

I'm sorry, but in my humble opinion, I think you already have your answers. Listen to your body and feed it the way it wants to be fed. If you respond well to the diet then you have your answer.  I think it is cruel and unusual punishment for a medical Dr. to insist that you and your son consume something that YOU ALREADY KNOW IS MAKING YOU SICK, just to see if there is any damage done yet. IT DOESN'T MATTER if there is or isn't any damage YET, if you keep consuming gluten even for ONE MORE DAY... you are putting yourself at further risk for other complications.

You've already done blood testing, even though you had already started the diet you showed markers... THAT IS SUFFICIENT EVIDENCE to go on the diet...IMHO of course.

I admit I am very opinionated about this and obviously in the minority. But I think we give medical dr.s entirely too much credit, They have MISSED this for too long. I no longer trust them. You can put yourself on the diet without the permission of a dr.

Disclaimer: This is only my opinion and I admit I feel very strongly about it and admit that others may not agree with me. That's ok. Do what you want with it.

<{POST_SNAPBACK}>

I agree with Nini! I think Drs need to use more common sense.

[ravenwoodglass]

I agree with Nini!  I think Drs need to use more common sense.

<{POST_SNAPBACK}>

I also agree, plus many of us never show up positive no matter how sick we are. You have your answer by the response to the diet.

[Nemi555]

Hi Rachel,

Thanks for your reply! My son isn't being tested on the 23rd, he's only going to see the Dr. for the first time. His blood test already came out negative but he had been eating gluten-free for several weeks. What we hope to accomplish by his eating gluten prior to the appointment is so the doc can see him unwell and also Joey will be able to explain to him what symptoms he's having. We want the dr. to send him for the biopsy to confirm. He might not do that based on a negative blood test and him feeling just fine. You know how dr's can be - if you aren't experiencing serious symptoms now, they don't believe you were ever sick.

Cathy

Hi,

Just so you know eating gluten just for a few days before the test most likely wont give a positive result even if your son has Celiac. Be prepared that he could have a false negative due to already starting the diet.

<{POST_SNAPBACK}>

[Rachel--24]

You know how dr's can be - if you aren't experiencing serious symptoms now, they don't believe you were ever sick.

<{POST_SNAPBACK}>

From my experience you can be extremely sick, losing lots of weight, unable to even hold your head up, in tears begging for help and they still don't really think you're sick.

[Nemi555]

Nilsa,

I agree with you and appreciate your honesty! We have every intention of returning to the diet but I do think it is important for there to be an "official" diagnosis. I myself am not keen on doctors and have only had a couple of them during my lifetime that I trust and feel that truly listen. But this is for my son and I don't want him to have a lifetime of problems! So we will play the game for a little while and then do what we think is right. So far our symptoms are not severe and by mid-December we will be back on our gluten free diet and feeling just fine!

Cathy

Why on earth can't the Dr.s accept a positive dietary response as a diagnostic tool????? Oh, let's just make them sick so that we can charge the insurance companies more money for the tests...

[Guest nini]

Nilsa,

I agree with you and appreciate your honesty! We have every intention of returning to the diet but I do think it is important for there to be an "official" diagnosis. I myself am not keen on doctors and have only had a couple of them during my lifetime that I trust and feel that truly listen. But this is for my son and I don't want him to have a lifetime of problems! So we will play the game for a little while and then do what we think is right. So far our symptoms are not severe and by mid-December we will be back on our gluten free diet and feeling just fine!

Cathy

<{POST_SNAPBACK}>

I understand your point, My daughter is 5 and her symptoms from birth to age 3 were so awful, but I still couldn't get the Ped. GI to acknowledge that it was anything other than IBS even though I had recently tested positive for it and she was exhibiting every symptom that I had as a child.

Her Pediatrician was the one who finally agreed with me that we would try the diet after the whole fiasco with the Ped. GI's... my daughter does not have a "official" diagnosis, but at 5 she already understands that when she eats gluten she gets sick. Her Pediatrician said that "we know it's Celiac, but we don't need a pos. dx on her permanent record because of insurance reasons (she could be denied coverage)

I went undiagnosed for 34 years, when all it would have taken was for someone to put me on the gluten free diet and I would have seen an instant improvement. I very nearly died waiting for the medical establishment to figure out what was wrong with me.

[Jenn2005]

You could always check out Entrolabs website www.entrolabs.com and see if that is something you are interested in doing. You have to purchase it yourself but you can have your son tested to see if he has the genes that predispose to Celiac. Everyone feels differently about these test and there are some topics on here about the test you might be interested in reading.

Jennifer

[Nemi555]

Hi,

I was curious about something my doctor said when I was there last week - something about my IGA being within normal range and I recall telling him that I had been trying to avoid gluten for several weeks before the test. We didn't realize it was the wrong thing to do.

Anyway, I called my allergy doctor and asked her to fax me my results and this is what they said:

IGA Gliadin antibody 5 (normal 0 to 19)

IGG Gliadin antibody 24 (normal 0 to 19)

Would a couple of weeks be long enough to affect the IGA results? My doctor said he was curious about the first and is sending me for the biopsy but also for an intestinal xray. They have under secondary diagnosis: IBS IBD/sprue. I read something about Selective IGA deficiency and it is supposed to be "the most common of the primary immunodeficiency diseases." It further states that allergies "may also be more common among idividuals with Selective IgA Deficiency than among the general population." One more thing they say is "Another type of allergy associated with IgA deficiency is food allergy, in which patients have reactions to certain foods. Symptoms associated with food allergies are diarrhea or abdominal cramping." And those are definitely symptoms that I have!

I don't know! It's all so frustrating not knowing what is going on. But I know my son wants to maintain a gluten free diet because he feels 100% better and more than likely I will too. I've been eating a few things here and there to build up my system for the upcoming tests and I certainly haven't felt well. I'm not sure I want a return of all the symptoms!

Cathy

[Guest nini]

well first of all if those are the only two tests they did, then you DID NOT have the complete Celiac panel and therefore cannot be an accurate indicator. Secondly, if you were cutting back your gluten intake prior to the testing it very well may have skewed the results. Third, if you feel better without gluten in your diet, does it really matter if it's Celiac, Gluten Intolerance, or a wheat allergy? The end result and the ONLY treatment is a gluten free diet. So. Why waste more time making yourself miserable for testing, when you can simply go gluten free and start to feel better? Especially if you aren't consuming enough gluten for damage to show YET? The tests can ONLY rule Celiac in, they cannot rule it out ever. You may have the tendencies for it and just don't show enough damage yet. Fourth, one of your numbers WAS elevated and definitely an indicator that there is a problem with gluten.

I really am serious that gluten is not healthy for anyone and some of us are just "the canaries in the coalmine" indicator that we are poisoning ourselves with food.

[Guest nini]

Also, IBS/IBD is NOT a diagnosis PERIOD. Any Dr. that tries to get away with saying it is a definitive diagnosis, really needs to be questioned on that. IBS/IBD are simply a collection of SYMPTOMS that they DO NOT know what causes it (It's the gluten I betcha!)... They will treat your IBS/IBD with pharmaceuticals that they are getting kickbacks to prescribe. They get NOTHING for prescribing a gluten free diet. Most Dr.s believe if they can't fix it with a drug, then there is nothing to fix. But... the kicker is, they aren't fixing anything, only masking the symptoms.

[mommida]

As was all ready posted, I would like to add my daughter couldn't make it through 2 weeks on gluten to try and have the tests done. She ended up in the hospital with dehydration, from the vomiting and "D" from trying to eat gluten. Granted she was about 16 months old at the time and dehydration can go from bad to worse so quick in little kids. She was genetically tested positive for DQ2 andDQ8 celiac genes.

I just want you to consider how much are you willing to sacrifice for an "official" diagnoses?

Laura

[tarnalberry]

Anyway, my son's initial appt with the gastro doc is on the 23rd and he said he will eat wheat (grudgingly) a few days prior to that so the doc will get a view of what's going on. Me, I'm starting to eat it again slowly as my biopsy isn't until Dec 19th and the xray of

<{POST_SNAPBACK}>

In order to not get false negatives, you need to be eating plenty of gluten, daily, for about three months before testing. I know it sucks, but the tests won't pick it up right away; there has to be enough intestinal damage for a biopsy to see it or for the antibodies to make it into the bloodstream.

[Nemi555]

In order to not get false negatives, you need to be eating plenty of gluten, daily, for about three months before testing. I know it sucks, but the tests won't pick it up right away; there has to be enough intestinal damage for a biopsy to see it or for the antibodies to make it into the bloodstream.

<{POST_SNAPBACK}>

[/quote

I guess I'm confused when it comes to my son...he had symptoms that I would have thought were more inidicative of celiac than mine were...he had the abdominal discomfort and distension, cankersores, irritability, fatty stools, stuff like that. He never had diarrhea or lost any amount of weight from it. Although he would go to the bathroom three times a day. And he's been off gluten for no more than a month - probably only weeks before the blood test. Why would his blood tests come back negative? And if he was off gluten for only a month or so then if he started eating it again a couple weeks prior to the biopsy, then it is possible that the test could still read positive if he has the disease? (if you're telling me that he has to be eating it for three months...and if he's only been off of it for 1, then returns to eating it, will there be enough in his system?)

I spoke to him tonight about it and told him he could forgo the biopsy if he chose and maintain the diet if it makes him feel better and he said that he wants to know for sure. Kind of like my doctor said - rather than condemn you to the diet he wanted to send me for the biopsy to confirm it. I guess I can understand that but I'm also going to use my head. If I FEEL better not eating it regardless of the test results, then I'm going to avoid gluten. It's odd too because I've been eating gluten foods these past few days and I have had reactions to the food...it's been a validation process for me. I know it sounds stupid but I guess I have to be sure in my mind that this is the way things are for me and it's not something else like allergy to some food. (I'm allergic to eggs and molds)

There is so much to know and understand.

Thanks for all your input!

Cathy

[Guest nini]

condemn you to the diet?????

this is not a sentence! this diet is a life saver...

[Nemi555]

well first of all if those are the only two tests they did, then you DID NOT have the complete Celiac panel and therefore cannot be an accurate indicator. Secondly, if you were cutting back your gluten intake prior to the testing it very well may have skewed the results. Third, if you feel better without gluten in your diet, does it really matter if it's Celiac, Gluten Intolerance, or a wheat allergy? The end result and the ONLY treatment is a gluten free diet. So. Why waste more time making yourself miserable for testing, when you can simply go gluten free and start to feel better? Especially if you aren't consuming enough gluten for damage to show YET? The tests can ONLY rule Celiac in, they cannot rule it out ever. You may have the tendencies for it and just don't show enough damage yet. Fourth, one of your numbers WAS elevated and definitely an indicator that there is a problem with gluten.

I really am serious that gluten is not healthy for anyone and some of us are just "the canaries in the coalmine" indicator that we are poisoning ourselves with food.

<{POST_SNAPBACK}>

I will have to find out more about this "full celiac panel" of tests and see what the doc says about that. Most of our symptoms are not typcial - neither of us has lost any weight - I tend to get alternating constipation with diarrhea, nausea, pain just below my sternum and on the lower left side of my abdomen, abdominal cramping that wakes me up at night, headache, irritability, loss of energy, stuff like that. So for me to know if it's celiac or some type of food allergy is important because while eating gluten free may help - is it the absence of gluten or is it some other component that I'm unconsciously including/excluding with it? Most of these symptoms only occurred when I ate pasta and lately they've picked up when I eat sandwiches, batter coated stuff, pizza, etc. so is that the celiac getting worse or is it some other additive that I'm having issue with? (like my allergy to eggs)

My son too only seemed to react with pasta - he ate a great deal of it. He never lost weight either and I think I mentioned his symptoms in another post... We both try and think back to see if there are clear symptoms and it could be that we felt lousy all the time so it becomes difficult to tell if it's only one thing causing the discomfort.

Now when my ex gets tested and if he comes back positive then for my son the odds are that he has it, regardless of any blood test results.

I know it seems we are hung up on getting confirmation of the dx but it seems important on some level. It does not mean that we won't continue to eat gluten free. It's just that I want to understand what is going on and I guess I want the docs to know too. I haven't had a lot of faith in the medical community in the past and from what I read here, many folks are not getting the support they need and deserve either. That is a travesty in my book (and pretty frightening!). I just don't want my son to have a lifetime of it and if I can help that not happen, then good! I'm also NOT going to accept a diagnosis of IBS. To me that is total hooey and I will NOT take any medications, fiber mixes, etc. They don't work! I want to know what is going on and I need to insist that my doctor work with me to figure it out.

Again, thanks for your input, it is helping me to think things out and understand what's going on. It can be so very confusing!

Cathy

[Nemi555]

well first of all if those are the only two tests they did, then you DID NOT have the complete Celiac panel and therefore cannot be an accurate indicator. Secondly, if you were cutting back your gluten intake prior to the testing it very well may have skewed the results. Third, if you feel better without gluten in your diet, does it really matter if it's Celiac, Gluten Intolerance, or a wheat allergy? The end result and the ONLY treatment is a gluten free diet. So. Why waste more time making yourself miserable for testing, when you can simply go gluten free and start to feel better? Especially if you aren't consuming enough gluten for damage to show YET? The tests can ONLY rule Celiac in, they cannot rule it out ever. You may have the tendencies for it and just don't show enough damage yet. Fourth, one of your numbers WAS elevated and definitely an indicator that there is a problem with gluten.

I really am serious that gluten is not healthy for anyone and some of us are just "the canaries in the coalmine" indicator that we are poisoning ourselves with food.

<{POST_SNAPBACK}>

I will have to find out more about this "full celiac panel" of tests and see what the doc says about that. Most of our symptoms are not typcial - neither of us has lost any weight - I tend to get alternating constipation with diarrhea, nausea, pain just below my sternum and on the lower left side of my abdomen, abdominal cramping that wakes me up at night, headache, irritability, loss of energy, stuff like that. So for me to know if it's celiac or some type of food allergy is important because while eating gluten free may help - is it the absence of gluten or is it some other component that I'm unconsciously including/excluding with it? Most of these symptoms only occurred when I ate pasta and lately they've picked up when I eat sandwiches, batter coated stuff, pizza, etc. so is that the celiac getting worse or is it some other additive that I'm having issue with? (like my allergy to eggs)

My son too only seemed to react with pasta - he ate a great deal of it. He never lost weight either and I think I mentioned his symptoms in another post... We both try and think back to see if there are clear symptoms and it could be that we felt lousy all the time so it becomes difficult to tell if it's only one thing causing the discomfort.

Now when my ex gets tested and if he comes back positive then for my son the odds are that he has it, regardless of any blood test results.

I know it seems we are hung up on getting confirmation of the dx but it seems important on some level. It does not mean that we won't continue to eat gluten free. It's just that I want to understand what is going on and I guess I want the docs to know too. I haven't had a lot of faith in the medical community in the past and from what I read here, many folks are not getting the support they need and deserve either. That is a travesty in my book (and pretty frightening!). I just don't want my son to have a lifetime of it and if I can help that not happen, then good! I'm also NOT going to accept a diagnosis of IBS. To me that is total hooey and I will NOT take any medications, fiber mixes, etc. They don't work! I want to know what is going on and I need to insist that my doctor work with me to figure it out.

Again, thanks for your input, it is helping me to think things out and understand what's going on. It can be so very confusing!

Cathy

[Nemi555]

condemn you to the diet?????

this is not a sentence! this diet is a life saver...

<{POST_SNAPBACK}>

Yes, it can be a life saver but it is a restricted diet and many people would feel it to be harsh. Of course if they were suffering they would gladly follow the diet. But let's face it, it's not mainstream (yet) and it's more expensive, requires more thought and preparation than eating all the food out there that the majority of the world eats! So, if you didn't need to eat that way, why would you? I think the doc just wants to make sure that it's necessary. I don't fault him here. YET.

[Guest nini]

Yes, it can be a life saver but it is a restricted diet and many people would feel it to be harsh. Of course if they were suffering they would gladly follow the diet. But let's face it, it's not mainstream (yet) and it's more expensive, requires more thought and preparation than eating all the food out there that the majority of the world eats! So, if you didn't need to eat that way, why would you? I think the doc just wants to make sure that it's necessary. I don't fault him here. YET.

<{POST_SNAPBACK}>

yes it may seem like a restricted diet, however, according to what the majority of people eat, IT IS A MUCH HEALTHIER DIET for anyone.

If you don't need to eat this way why would you? Well, because the normal way of eating is absolute CRAP and the gluten free diet is healthier and will make you all feel better.

I didn't lose weight with it either, in fact I was considered obese prior to my dx. 2 1/2 years into this I have now lost 90 pounds and feel a lot better than I did before.

It is ONLY expensive IF you go out and buy a lot of the specialty gluten free replacement foods. I stick with a few basics (a sandwich bread, a pasta that I like, and an all purpose flour mix) and the rest of what I buy is fresh meats, fresh fruits and veggies, dairy, rice and beans and potatoes. These things are less expensive than the typical processed crap that is in the stores.

[Guest nini]

there are also a lot of mainstream products that are naturally gluten free if you just spend some time looking around this site to find the lists...

Also, when it comes to the specialty gluten-free foods, some are really good and some are really gross, so you don't want to spend a lot on them, especially at first.

If you are concerned that it may be more than just gluten, do an elimination diet and keep a food journal. The elimination diet can help YOU pinpoint items in your diet that are setting you off. You do not need a Dr.'s permission for this one either.

My daughter may be only five, but she has a wisdom beyond her years when she says that gluten is poison for everyone and she doesn't understand why anyone would willingly eat it. (I did NOT tell her this)

[debbiewil]

Most of these symptoms only occurred when I ate pasta and lately they've picked up when I eat sandwiches, batter coated stuff, pizza, etc. so is that the celiac getting worse or is it some other additive that I'm having issue with? (like my allergy to eggs)

My son too only seemed to react with pasta - he ate a great deal of it. He never lost weight either

Cathy

<{POST_SNAPBACK}>

Cathy,

Let me tell you my story. I started having problems about 15 years ago. Just didn't feel right, fatigued a bit more easily, took longer to recover from colds, a little occasional diarrhea. Nothing major, but I told my doctor. Ran tests, and decided noting wrong with me - eat a better diet (as per the pyramid, which just made my worse) and get more exercise. Tried that, and got worse. 10 years ago, I stopped eating pasta becasue it always made me sick - stomach ache, diarrhea, etc. I cut down on bread products then, but still ate some. In the meantime, I kept feeling worse. I got anemia, so had to start on iron pills. Evenutally got up to 4 times the RDA daily, and still was anemic. Started having problems with bread, so stopped eating bread, cake, cookies, etc. about 5 years ago. Also developed autoimune thyroid disease. Still had anemia, now had thyroiditis. Was eating almost no wheat products, but nobody ever said anything about gluten, so was still getting some in other products. Never checked for things like barley, malt, brown rice syrup, etc. 3 years ago had some major problems with my right knee. Lost some cartilage and some bone. No injury or anything, just lost bone. Doctors couldn't explain. Now have a slightly shorter right leg than left and walk with a limp. Also very painful, and will probably need to have knee replacement surgery some day. Earlier this year, I started developing ataxia. During all this, I never lost weight - in fact, I gained about a hundred pounds. Couldn't lose weight, even after the thyroid disease was detected and treated. So now I have several illnesses, some permanent, which are most likely caused by eating gluten, even though I ate very small amounts. If someone had told my 15 or even 10 years ago that I could simply stop eating gluten, and NOT get the anemia, thyroid disease, and bone loss in my knee, I'd have thrown out gluten in a heartbeat!!!

As it was, I haven't eaten any of the "foods I can't live without" anyways in years, and still I got autoimmune diseases and problems that could have been avoided. I'm actually eating more of the "comfort foods" now that I'm gluten free, because they do make them from rice, corn, tapioca, potato, etc. After 10 years of NOT having a spaghetti supper, I had one the other day.

Think about it. Would you rather have that donut or cookie, or would you rather walk around the block without pain?

Debbie

[aikiducky]

And if he was off gluten for only a month or so then if he started eating it again a couple weeks prior to the biopsy, then it is possible that the test could still read positive if he has the disease? (if you're telling me that he has to be eating it for three months...and if he's only been off of it for 1, then returns to eating it, will there be enough in his system?)

<{POST_SNAPBACK}>

The point is, yes he's biopsy and blood results might be positive even if he had been gluten free for a while - but they might also be negative, simply if he's a fast healer and his antibodies go down quickly. So if you have been gluten free, and only eat a little gluten for a little while, and the blood tests or biopsy are negative, YOU STILL DON'T KNOW for sure! The idea with eating a good portion of gluten every day for three months is to make it as sure as possible that if there's something going on, it has a chance to show.

Personally, I would go with what my body tells me, and if you want to eliminate the possibility of other food intolerances/allergies, an elimination diet is always possible. But I can understand that you'd like to have a test result, and that's why I would like to encourage you not to sabotage the results by not eating enough gluten in the first place.

Just a thought though, if you (or your son) are unwilling to eat gluten long enough for the testing - what does that say about what you REALLY believe about gluten?

Pauliina

[Nemi555]

Hmmm, you all have certainly given me a lot to think about! I guess bottom line is that irregardless of the outcome of my biopsy, etc I am going to go back on the gluten free diet and stick to it for a good six months to see how I feel. That would be a good litmus test for me to really see how my body responds to it.

The last few days I've been eating gluten in preparation for my biobsy and I have to admit I feel like garbage. My allergies seem worse too. Of course it doesn't help that it's fall and the weather keeps waffling. But I was just starting to feel decent, clear headed and without abdominal pain and that says something. My system hasn't returned to normal yet...more constipation than the opposite and that gets uncomfortable. Rice is binding to say the least! I've been trying to eat more veggies to counteract the rice but maybe there is a vitamin that I'm missing?

And I do agree, one does not have to go hog wild on all the specialty items out there...fresh food is better anyway and since I have mold and additive issues I have to watch out for that stuff. My mom bought me a couple of cook books and I will begin to learn to bake stuff - breads and the like. I'm hoping to be able to eat egg whites so that I can do some other types of baking as I was more attached to eating cookies than other types of junk food. (and even then in moderation!)

My son is old enough now (17) to think things through (we have a good relationship and can talk) and I know that he too will decide to stick to the gluten free diet because he's been feeling better, has noticed how irritable and uncomfortable he gets when he eats even a small amount of gluten (like 2 slices of french toast)...I think he was just hoping that it would all go away and he could go back to eating everything. And believe it or not, he ate decent food - not a lot of junk!

It seems like there is an emotional process one has to go through (or at least we do) but logic and common sense do win in the end, one just has to go through the mental exercise to get there. Thanks for helping me with it.