I'm Not Convinced Celiac Is My Problem?

[vbecton]

Hello,

I need your help guys! I was diagnosed with Celiac through blood tests and now that I have read over all the possibilities, I don't know which blood test determined my fate! Sadly. I have been suffering with abdominal discomforts all my life. But, never anything that wasn't manageable. I am an runner and have been competing at the professional level for a few years. I felt pretty much great, but with the usual gassy, bloated belly for the majority of my life. I also have hypoglycemia. I manage all things through diet as I am an avid vegetarian and most days I'm completely vegan. I am 95% against all things Western medicine and have opted to be a devoted chiropractic patient for 15 years.

That is a little of my history. Now on to my diagnosis. My diagnosis suggested that I had Celiac. YIKES. Okay fine, I could deal with it. I mean controlling my diet is a Vegan's best friend. But now that I've been gluten free for 3 months I'm SICKER than I EVER have been. I am a label freak being a vegan and can spot even the most elusive wheat beast, as I have been spotting hidden animal products for ages. I almost always bring my own food everywhere. I doubt that I have been glutened more now than pre-diagnosis. Has anyone else experienced a greater increase in symptoms when going gluten free? I thought I was supposed to feel better. Not worse. I am thinking I was misdiagnosed and that I have some other GI disorder. Is there such a thing as just being gassy?

I would love to hear any suggestions! I am at capacity with my abdominal dysfunction at this point especially after 3 months of pure gas. I think my husband is ready to take up a tent outside!

Thanks!!!!

Suzy

[celiacgirls]

What are you eating now?

This may be obvious, but are you watching for barley, malt, rye, and oats as well as wheat?

If you are getting glutened now, you may be noticing it more than pre-diagnosis. I had symptoms of depression and fatigue pre-diagnosis, but if I am glutened now, those symptoms are much worse than they ever were. And it just takes a tiny trace of cross contamination to bring on those symptoms.

[Guest cassidy]

Hate to break it to you, but if the blood test says you have it, then you have it. They often give false negatives but not false positives. So, sorry you are feeling worse but it sounds like it is time to play detective and figure out what you are doing differently.

Have you checked all cosmetics/bathroom products?

Could something other than gluten be bothering you? Many of us have found other intolerances after going gluten-free. Do you have good and bad days? Could you keep a food diary to see if there is a pattern? I can't tolerate potatoes or tomatoes anymore, and that took a while to figure out.

Also, many people have found that they have worse reactions to gluten after going gluten-free. For instance, pasta was my favorite food. I would eat it all the time and have some good and bad days before going gluten-free. Now, if I come in contact with some crumb of gluten that I can't even see I will have symptoms for 3 weeks. How could I go from eating a bowl of pasta everyday to not being able to tolerate a crumb? So, you might be getting 99% of the gluten out of your diet, or 100% almost all the time and the occasional glutening is getting you very sick.

So, I would recommend accepting the celiac is what is wrong, but may not be the only thing wrong, and concentrate on trying to figure out what exactly could be making you sick. Good luck!

[jesscarmel]

Hi Suzy

I got worse before i got better. i started the diet in march and felt much worse at first but i should say i was also recovering from pancreatitis caused by the celiac. i started to feel better about 3/4 months down the road. at that time i also started taking a probiotic and we made our whole house gluten free. hang in there! maybe you should see you gastro just to make sure you dont have other stomach problems. i had a bunch of tests cause i wasnt getting better but they were all fine- it did make me feel better to know that thhough.

I was really mad that i was worse when i heard ppl say that i would feel so great in weeks. it was very frustrating and it made me really sad and angry.....i can understand how you are feeling

feel better soon!!!!!!!!

Jess

[Rachel--24]

You could have Celiac with additional food intolerance. Dairy should be eliminated in the beginning months while the villi heal. I'm not sure that this is an issue for you...since you are vegetarian??

Have you added anything new into your diet after eliminating gluten?

Also, I think it would be important to find out the results of your testing. For example....if you were diagnosed based on only having elevated IgG..this would not necessarily mean you have Celiac.

There are other conditions known to cause elevated IgG antibodies. This does mean that your body is reacting to gluten but it doesnt mean that Celiac is the cause. You can be gluten intolerant without having Celiac. If you are not convinced....I would look more into it...starting with the test results.

If your immune system is reacting to gluten for any reason...you should avoid it. If its not Celiac...you may have to keep searching for other causes.

If your test results were positive for anti-gliadin IgA, tTG or EMA.....this would be indicative of Celiac Disease. The tTG and EMA are highly specific for Celiac.

Also, if you were only positive for IgG antibodies....make sure you were tested for IgA deficiency. It should be included in the Celiac Panel...but many times its left out. If you are IgA deficient you will not be able to produce enough IgA to test positive for anti-gliadin IgA...or tTG. So you could have Celiac Disease with only the IgG being positive.

[gfp]

You could have Celiac with additional food intolerance. Dairy should be eliminated in the beginning months while the villi heal. I'm not sure that this is an issue for you...since you are vegetarian??

Have you added anything new into your diet after eliminating gluten?

Or you could just have added another product you ised to eat less of...

Also, I think it would be important to find out the results of your testing. For example....if you were diagnosed based on only having elevated IgG..this would not necessarily mean you have Celiac.

There are other conditions known to cause elevated IgG antibodies. This does mean that your body is reacting to gluten but it doesnt mean that Celiac is the cause. You can be gluten intolerant without having Celiac. If you are not convinced....I would look more into it...starting with the test results.

If your immune system is reacting to gluten for any reason...you should avoid it. If its not Celiac...you may have to keep searching for other causes.

This is really just one definition of celiac, for the majority of the time the condition has been known about (2000 years) we had neither biopsy or blood tests... the invention (or modification) or the biopsy tool for the lower intestine hasn't actually changed the disease, just how some people chose to define it. The point I'm trying to make is it's really not important for the sufferers, the diagnostic golden test is more important for the medical profession to attach a label and ownership. A significant (and increasing) amount of medical opinion of non GI's is that serology is the basis for diagnosis and biopsy is the basis for assesing part of the damage. However as far as the patient of today is concerned (zonulin testing being ongoing) the treatment is the same which is a 100% gluten-free diet....

However a negative aspect of pigeon-holing the disease for the sufferers is that this then allows the incidence of people suffering from "celiac disease" to be under represented. This is amplified by the invasive and self destructiver nature of the biopsy which also discourages people from "official" diagnosis...and the more marginalised we become and the more we can be dismissed as a few fad eaters with only a small proportion having +ve biopsies the less legislation will protect us.

If your test results were positive for anti-gliadin IgA, tTG or EMA.....this would be indicative of Celiac Disease. The tTG and EMA are highly specific for Celiac.

Also, if you were only positive for IgG antibodies....make sure you were tested for IgA deficiency. It should be included in the Celiac Panel...but many times its left out. If you are IgA deficient you will not be able to produce enough IgA to test positive for anti-gliadin IgA...or tTG. So you could have Celiac Disease with only the IgG being positive.

Yes all good advice, its only the definition of celiac disease I have issue with because its a somewhat exclusive definition and because it divides (even creating some snobbery) of biopsy Dx vs serology vs long term dietry testing...

I would love to hear any suggestions! I am at capacity with my abdominal dysfunction at this point especially after 3 months of pure gas.

I have but I doubt you will like it.

Try keeping a sheep or goat inside and you'll see that herbivores pass a lot of gas because they ingest very poor quality protein.

As a vegan you can aim for higher quality proteins BUT being celiac severly limits this..especially your ability to combine different proteins to achieve a mix of higher quality.

The second problem is that many of the higher quality vegan proteins are artificail to some extent, people were never made to derive protein from soy, indeed Indeed the introduction of soy as a cheap protein causes diseases in everything from pigs to parrots.

I'm not rabidly anti-soy... BUT I do try and moderate it because most celiacs or a significant number seem to develop other intolerances and soy is one of them. The last thing I need is another intolerance! so I keep it minimal as a source of protein in my diet... Im not against some nice tofu once in a while or even soja sprouts .. I just try not to rely on them as a protein source which is simple since Im an omnivore.....

Other good sources like various nuts and seeds also carry a intolerance risk....

The simple answer may be to consider this.

The bottom line seems to be some people react better than others to veganism..and also this varies through our life (very few vegans beleive in not giving infants breast milk because this is what a baby is designed to grow on). it might be that you are not the best type for veganism OR the celiac has messed you up and this it preventing it working for you until your body repairs...

Everything Cassiy says is worth rereading!

[Rachel--24]

Yes all good advice, its only the definition of celiac disease I have issue with because its a somewhat exclusive definition and because it divides (even creating some snobbery) of biopsy Dx vs serology vs long term dietry testing...

The reason for my statement is not to seperate the two issues. I clearly said that *anyone* who is reacting to gluten should remain on the diet. I do not see a difference as far as treatment goes....nor do I see a difference between a biopsy proven celiac vs. serology vs. dietary testing.

Afterall dietary testing would be the most definative test of all...in my opinion. However, when the dietary testing fails to improve symptoms.....one should certainly get a better understanding of how and why they were diagnosed....and determine that it was the correct diagnosis.

For those of us who do not recover or who are still symptomatic... it is best to get all of the details and not make an assumption. You would not make an assumption as to whether or not you have cancer w/out clearly understanding the results,...and equally...you should have a good interpretation of what your bloodtest results mean...with regards to any disease...including Celiac.

I do not have Celiac....but it doesnt mean I can eat gluten....I cant. The cause of my gluten intolerance was not Celiac Disease.....it was leaky gut. Leaky gut which was caused by *other* issues.

So...yes....it is very important when you are not getting better to have a full understanding about all testing (including dietary ones) so that you can move to the next step if need be.

It has nothing to do with seperating or dividing various methods of diagnosis...it has everything to do with having enough knowledge to get the correct diagnosis for yourself...whether it be Celiac (by dietary results, biopsy results or serology results) or something else.

The poster clearly said she had no understanding of her bloodtest results and was unsure of her diagnosis, as she is feeling worse.....I simply answered her questions with regards to that.

Please dont make the assumption that I am categorizing Celiacs into various groups based on diagnosis.....its simply not true. I am not a diagnosed Celiac....I dont even carry a gene but if I want to attend a Celiac support group I feel I have just as much right to do so as someone who is biopsy proven Celiac. In the end....I need to stay on the diet....and I take that very seriously.

[jhun]

I myself is not convinced about my diagnosis. I saw a 4th GI doctor today who agreed to do an endoscopy and a biopsy, probably I'll get it done by Wednesday. My 3rd GI doctor diagnosed me with celiac through blood work but didn't want to do an endoscopy and said that there is no point in doing it since I have a positive IgA and an elevated tTG.

Just like you my symptom is just gas, no cramps or nausea or diarrhea or whatever. I've been gluten free and lactose free for a month now with no significant reduction in belching and flatus. Since this diet is a lifetime commitment I want to be sure about it and get the gold standard of diagnosis.

Hello,

I need your help guys! I was diagnosed with Celiac through blood tests and now that I have read over all the possibilities, I don't know which blood test determined my fate! Sadly. I have been suffering with abdominal discomforts all my life. But, never anything that wasn't manageable. I am an runner and have been competing at the professional level for a few years. I felt pretty much great, but with the usual gassy, bloated belly for the majority of my life. I also have hypoglycemia. I manage all things through diet as I am an avid vegetarian and most days I'm completely vegan. I am 95% against all things Western medicine and have opted to be a devoted chiropractic patient for 15 years.

That is a little of my history. Now on to my diagnosis. My diagnosis suggested that I had Celiac. YIKES. Okay fine, I could deal with it. I mean controlling my diet is a Vegan's best friend. But now that I've been gluten free for 3 months I'm SICKER than I EVER have been. I am a label freak being a vegan and can spot even the most elusive wheat beast, as I have been spotting hidden animal products for ages. I almost always bring my own food everywhere. I doubt that I have been glutened more now than pre-diagnosis. Has anyone else experienced a greater increase in symptoms when going gluten free? I thought I was supposed to feel better. Not worse. I am thinking I was misdiagnosed and that I have some other GI disorder. Is there such a thing as just being gassy?

I would love to hear any suggestions! I am at capacity with my abdominal dysfunction at this point especially after 3 months of pure gas. I think my husband is ready to take up a tent outside!

Thanks!!!!

Suzy

[vbecton]

You guys are all AWESOME, but, if anyone's suggestion is eating meat, or animal products I'd rather starve to death. I have only consumed meat a few times in my entire life and I don't plan on stiffling my ethics now because I can't consume gluten. It just means I'll be that much more devoted to what I can and cannot consume. I don't make a habit of consuming soy. The bottom line is almost ALL soy products contain gluten. It is a good emulsifier for soy. BEWARE all gluten intolerant folks. As far as protein consumption goes, give me healthy, all-natural protein which can very well be completed by a complimentary grain (corn, rice, etc...) than a heart-stopping and cruelty induced animal protein anyday. Just a thought, but the amount of soy that Asian populations consume would exhaust American pharmaceutical findings from suggesting that soy is in anyway bad...they are far healthier than Americans.

I almost never, and I mean never, consume anything packaged, prepared or otherwise cooked by someone else. But, I have failed to look at household products....excluding that all my household products are cruelty free certified...that does not mean they are gluten free (good point!!!). The only time I eat cheese is if I am overseas in a country with higher processing standards and anti-animal cruelty, such as Germany...or from a local dairy farm where I can see the animals are free to roam and are well taken care of.

As far as Celiac is concerned, the blood test I had cannot be definitive. I say that because until I know exactly which one I had, I don't know that it means anything. Thanks to everyone who is so supportive! This forum really gives me a place to talk to folks who know what I'm going through. I know I'm entirely different than most Celiacs because of my veganism (in fact, I should make a cookbook!), and even if we don't eat the same things, you guys know my digestive issue.

I will most certainly go for more testing especially now that I know the specific blood tests of which I should have. The reason I even cared to consider going for testing is that I felt sluggish during my training. Now...the more I read about Celiac and other related GI disorders...the possibilities are numerous.

So, some of you used to be able to "tolerate" gluten pre-diagnosis, but post-diagnosis and on a gluten free diet you became suddenly super toxic by it? My only symptom is excessive gas and bloated belly, which is because of the gas...so, what were the reasons some of you decided to figure out your ailment?

[wowzer]

Just a thought, what about your fat intake? My brother in law ended up in the hospital for pancreaitis. He was put on a very low fat diet.

[vbecton]

Rachel, I love this analogy about cancer. You have summed up my feelings about the entire diagnosis. This is not something to gamble with and hope for the right diagnosis. I want the right diagnosis

For those of us who do not recover or who are still symptomatic... it is best to get all of the details and not make an assumption. You would not make an assumption as to whether or not you have cancer w/out clearly understanding the results,...and equally...you should have a good interpretation of what your bloodtest results mean...with regards to any disease...including Celiac.

[gfp]

The reason for my statement is not to seperate the two issues. I clearly said that *anyone* who is reacting to gluten should remain on the diet. I do not see a difference as far as treatment goes....nor do I see a difference between a biopsy proven celiac vs. serology vs. dietary testing.

Afterall dietary testing would be the most definative test of all...in my opinion. However, when the dietary testing fails to improve symptoms.....one should certainly get a better understanding of how and why they were diagnosed....and determine that it was the correct diagnosis.

For those of us who do not recover or who are still symptomatic... it is best to get all of the details and not make an assumption. You would not make an assumption as to whether or not you have cancer w/out clearly understanding the results,...and equally...you should have a good interpretation of what your bloodtest results mean...with regards to any disease...including Celiac.

I do not have Celiac....but it doesnt mean I can eat gluten....I cant. The cause of my gluten intolerance was not Celiac Disease.....it was leaky gut. Leaky gut which was caused by *other* issues.

So...yes....it is very important when you are not getting better to have a full understanding about all testing (including dietary ones) so that you can move to the next step if need be.

It has nothing to do with seperating or dividing various methods of diagnosis...it has everything to do with having enough knowledge to get the correct diagnosis for yourself...whether it be Celiac (by dietary results, biopsy results or serology results) or something else.

The poster clearly said she had no understanding of her bloodtest results and was unsure of her diagnosis, as she is feeling worse.....I simply answered her questions with regards to that.

Please dont make the assumption that I am categorizing Celiacs into various groups based on diagnosis.....its simply not true. I am not a diagnosed Celiac....I dont even carry a gene but if I want to attend a Celiac support group I feel I have just as much right to do so as someone who is biopsy proven Celiac. In the end....I need to stay on the diet....and I take that very seriously.

Rachel, the whole point I'm making is the definition of Celaic disease is not constant. It changes according to where you are and when you were diagnosed.

Just to illustrate this as yopu said "but if I want to attend a Celiac support group I feel I have just as much right to do so as someone who is biopsy proven Celiac. " unfortunately this is not the case.

Coeliac UK will only admit biiopsy proven celiacs that means if you have no biopsy (or even one from outside the UK) and no support, you will be denied access to their resources etc. and this is a charity. Furthermore they go to lengths to distance themselves from non-diagnosed coeliacs or gluten intolerants, implying the latter are just fad dieters.

On top of this CUK "advise" on who can and cannot receive prescription items for gluten-free bread/flour etc. and also continue to propogate the biopsy as the only test for celiac disease.

If we go back 100 yrs only then by all medical diagnosis at the time you would have been classed a celiac, gene testing, biopsies and serology were not available and hence the disease has been classified according to diagnostics, not the symptoms, prognosis nor response to a gluten-free diet.. The problem with this is we don't really understand celiac disease or gluten intolerance fully... the most specific test based on our current understanding is serology because if you have antibodies then your body is reacting and genes certainly have a major part to play.

However when you say you don't have the gene its more accurate to say you don't have any of the current genes associated with celiac disease. Although the HGP identified some 25,000 genes we still don't know what much if it does.

We are 98.77% identical to a chimpanzee yet that 1.33% makes a huge difference... since we actually uinderstand less than 3% of the genomes functions even in a gross way.

The HGP also discovered that in humans the absolute genes are less important than the total variation induced by gene splicing giving the total proteome and additional modification of DNA by sugars.

Thus at some time in the future it is not impossible that another DNA sequence will be found which can trigger celiac disease and that you might have that sequence.

The value of being diagnosed is only as good as the understanding of the disease as pertains to understanding it.

However because of the way the medical community works pigeon holing a disease with many disparate symptoms based on a single symptom simply exagerates study in one area and not another which itself leads to increased specificity but only in one area.... and this itself leads to good research elsewhere being disguarded.

If we focus only on the biopsy part then this makes the disease the "property" of GI specialists but many of these same GI specialists refuse to accept scientific study from other areas, especially when the testing was not done to their standard. (biopsy).

Thus a lot of good research has been undertaken from everyone from phychiatrists to neurologists and the vast majority of GI specialists refuse to even consider the findings because they argue with the method of diagnosis.

This doesn't help our overall progression of the knowledge of both celiac disease and how it is tied to gluten intolerance nor other associated conditions.

For example there is a good understanding about the ties between glaucoma and diabetes. This would not have been possible if diabetes was not so easy and non invasive to screen for. Was a link was made glaucoma patients were screened for diabetes and it probably saved a lot of lives.

If you take white brain lesions on MRI this has been known about for some time yet the furthest the GI docs ever got to looking into this was to dismiss the testing procedures for screening celaics in the study.

Yes its very important to deterimine illnesses that are non celiac disease in someone who is having problems BUT we don't yet know what celiac disease is. Neither do we have a reliable list of associated conditions because each time someone makes a connection the GI's jump in to protect their turf and dismiss the study as meaningless.

The main problem with this is there are still many MD's who refuse to accept serology as proof, regardless of how exhaustively it is done and regardless if the combined tests have a greater specificity than biopsy.

The process of the biopsy itself is a problem in that as an invasive and expensive process but mainly because anyone who seeks later confirmation of serology for whatever reason can only do so by willingly damaging themselves. This really goes against the "do no harm" ethic of modern medicine for not only is the process of reglutening by definition damaging an important organ but it may never fully recover.

If you compare this to diabetes then it is like denying a patient aid until they can prove chronic renal failure by biopsy.

If you compare screening research and diagnosis a glucose tolerance test is usually used. For screening purposes the 2 hour test is usually the only one used. For diagnosis sometimes a more sensitive test is used but diabetes researchers don't dismiss out of hand te majority of scientific studies that only use the 2hr test.

Currently we have a definition of celiac disease that depends where you live and when you were tested. In the UK you need a biopsy, in Italy a full celiac disease serology panel is sufficient.

However diagnosed incidence in Italy is 1:300 vs 1:>1000 in the UK but screening puts incidence in both populations at 1:100-1:200 .... (this depends how specific the serology is)....

In the same way because Italy accepts serology as diagnosis it is far further along correlating celiac disease with related diseases or expressions/aspects of it and this in turn is relfected in the medical communities familiararity with it and keeping up with research on it...

In the UK most MD's never see a celiac, in Italy most have several in their practice..... but the Italian celiacs would not be accepted as celiacs in the UK.

From just being on this board it is obvious that many aspects of celiac disease are shared with gluten intolerants, even those with -ve biopsy. Unfortunately MD's refuse to recognise these conditions even when 50% of their diagnosed patients are suffering them.

As an example before diagnosis I already underwent a stomach biopsy and lots of tests while my primary symptom was GERD.... the specialist GI told me there was absolutely no connection between the GERD and the excess wind I was experiencing ... further it never occured to them to even screen for celiac.

When my mother was diagnosed she faced the same battle... and it was only at my insistence the GP finally sent serology for testing... which came back positive and then my mother underwent a biopsy to be annunced with total villous atrophy. The same GP had previously referred her to a physciatrist for being a hypochondriac.

At any point in the 5 years it took my mum to be diagnosed a simple and cheap blood test could have solved the problem. So would a biopsy but her MD would have been reluctant to send her for one and she would probably never have got one.

So from my POV it is important to identify everything but the biopsy should never be used as a primary diagnostic symptom. Its usefulness is limited to either identifying the amount of damage to the amout of repair or screening for complications ... if you are already diagnosed and gluten-free then the value of a biopsy is limited to seeing if you are repairing NOT deliberatly trying to cause damage to see if you are still celiac!

The question I would ask is if my mother sticks to her diet and her villi repair totally (which doesn't seem like the case unfortunately) what is the value of deliberatly damaging them again?

Any other use of the biopsy can be useful but its usefulness is limited by deliberatly redamaging the villi.

In the case of people who were diagnosed without biopsy then this leaves an awkward question.... if they feel they should be. As is the case here .. what happens if the biopsy is negative?

You can either keep them on gluten and test again or not, if not then do you declassfy them as celiac? If they are ill from eating the gluten for the challenge but the biopsy is negative or inconclusive do you then tell them to eat gluten?

I once read a medical paper by a Norwegian MD who spent 7 years testing a child until he got a positive biopsy.

I find that monsterous. The paper explains hopw the child was ill each time and each challenge was with more gluten and longer until eventually he got a positive result....

IMHO the MD not only needs to be struck off but given a custodial sentence.

[Electra]

Hello,

I need your help guys! I was diagnosed with Celiac through blood tests and now that I have read over all the possibilities, I don't know which blood test determined my fate! Sadly. I have been suffering with abdominal discomforts all my life. But, never anything that wasn't manageable. I am an runner and have been competing at the professional level for a few years. I felt pretty much great, but with the usual gassy, bloated belly for the majority of my life. I also have hypoglycemia. I manage all things through diet as I am an avid vegetarian and most days I'm completely vegan. I am 95% against all things Western medicine and have opted to be a devoted chiropractic patient for 15 years.

That is a little of my history. Now on to my diagnosis. My diagnosis suggested that I had Celiac. YIKES. Okay fine, I could deal with it. I mean controlling my diet is a Vegan's best friend. But now that I've been gluten free for 3 months I'm SICKER than I EVER have been. I am a label freak being a vegan and can spot even the most elusive wheat beast, as I have been spotting hidden animal products for ages. I almost always bring my own food everywhere. I doubt that I have been glutened more now than pre-diagnosis. Has anyone else experienced a greater increase in symptoms when going gluten free? I thought I was supposed to feel better. Not worse. I am thinking I was misdiagnosed and that I have some other GI disorder. Is there such a thing as just being gassy?

I would love to hear any suggestions! I am at capacity with my abdominal dysfunction at this point especially after 3 months of pure gas. I think my husband is ready to take up a tent outside!

Thanks!!!!

Suzy

Suzy,

I only read your post so I have no idea what information was given out above, but I got rushed to the hospital before I got tested and the doctor suggested I check out Porphyria. It's also an autoimmune difficiency disease, but it's simpler to test for. I'm not saying I think you have it, but it's worth researching. Good Luck and I hope you get your answers soon. I would find out the exact blood tests you had too, because if the entire panel came back positive then chances are you DO have celiac!!

[Rachel--24]

If we focus only on the biopsy part then this makes the disease the "property" of GI specialists but many of these same GI specialists refuse to accept scientific study from other areas, especially when the testing was not done to their standard. (biopsy).

Thus a lot of good research has been undertaken from everyone from phychiatrists to neurologists and the vast majority of GI specialists refuse to even consider the findings because they argue with the method of diagnosis.

I just want to clarify that nowhere in my posts did I say anything about the biopsy being "gold standard" or necessary for diagnosis.

In fact I do not believe the biopsy is of any value...unless it comes back positive. I think its outdated, certainly not the "gold standard" it was once thought to be, and misses most cases of Celiac.

I also realize that there is a small chance of my having Celiac w/out carrying a gene.....however I've ruled that out for myself due to the fact that the diet did not resolve my health issues...it was just one step in the right direction.

I've done enough research on the subject to say that I'm quite certain that I have gluten intolerance (without Celiac).....I will not develop Celiac at any time in my life. This isnt to say that gluten doesnt cause me harm....it definately would if I were to be consuming it.

Anyone with leaky gut will develop an intolerance to gluten and/or casein....its inevitable. There are many causes for leaky gut. I have determined my cause....and its not Celiac Disease.

For those who have clearly positive bloodwork.....especially tTG...the answer is clear. For those who get well after eliminating gluten....the answer is clear. I do not fall into either of those categories...so my answer was anything but clear. I had to keep searching to get the right answers.

Dont get me wrong....I do believe positive IgA and positive tTG =Celiac Disease....no doubt about it. There is no need to proceed with a biopsy with these results.....in my opinion.

I also feel you cant lump every individual who is reacting to wheat into a category of Celiac Disease....especially when the person is still symptomatic and even more so when the tests are not showing any evidence of Celiac.

[Electra]

Hate to break it to you, but if the blood test says you have it, then you have it. They often give false negatives but not false positives. So, sorry you are feeling worse but it sounds like it is time to play detective and figure out what you are doing differently.

In my reading this is not completely true. I know that there is one test that does not give false positives, but it really depends on how the person was diagnosed. There is one of the Celiac panel tests that (if it comes back positive alone) has a much higher rate of false positives, because it can come back high due to wheat allergies. If the entire panel came back positive then it's very unlikely that there is a false positive, but if the doctor diagnosed Celiac based on one high number then it could be due to something else.

Here is some info...

"The presence of tTG antibodies is highly suggestive of celiac disease, while AGA can be elevated also in cases of wheat allergy."

Open Original Shared Link

I've read more on this too, so I'll try to dig that info up and post it later.

I do agree that most of the time a positive is a positive, but it is important to find out what tests were done to know for sure (that's my opinion of course )!!

[Electra]

Here is some more information I found, but I DO NOT know how reliable this source is!!

"Endomysial antibodies and anti-tissue transglutaminase antibodies are highly reliable in diagnosing celiac disease. An individual with abnormally elevated endomysial and anti-tissue transglutaminase antibodies has a greater than 95% chance of having celiac disease. Anti-gliadin antibodies are less reliable and have a high Open Original Shared Link rate. Thus a person with an abnormally elevated anti-gliadin antibody level does not necessarily have celiac disease."

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[rez]

Rachael and Angie both make great points. If you EMA is positive, it's almost never a false positive. tTG can be false positive in other autoimmune disorders involving thyroid, liver, and most of all type 1 Diabetes. The AGA tests aren't even used in diagnosing Celiac anymore because they don't have the specificity. Celiac is a condition where complications and other conditions can arise, and I think it's smart to do the best to find out all the answers.

[hathor]

What has taken up the slack in your diet? If you cut out things with gluten -- and assuming the same level of food intake -- you must be having more of something(s) else. If I were you, I would look into those items first and see if any of them can cause gas production. Has the fiber content of your diet changed, for instance?

Is the gas problem constant in intensity or does it vary? If the latter, keeping a journal of what you eat and how you feel may be helpful.

There are candidates to consider. As someone else mentioned, it could be fat. Dairy could also be the culprit. (I follow a vegan-with-no-added fat diet at home, but sometimes can't avoid fat and dairy when eating out. Both make me tremendously gassy.) Some people react to coffee and alcohol. Fruit or certain vegetables may be a problem, or carbonated drinks or items containing high fructose corn syrup (which seems to show up everywhere in processed food -- I was looking the other day at fatfree salad dressings at the store, and every single one had this as a major ingredient). Also, since you mention being hypoglycemic, do you use artificial sweeteners? Sorbitol in particular causes many people to bloat.

You may need to be a bit of a detective. If you have products using sorbitol (other artificial sweeteners may also be a problem), for instance, eliminate them. For sweetening things yourself, you could use stevia instead. Cut out items labeled "sugar-free." Then see how your body reacts. If this doesn't help, then try eliminating something else.

[celiacgirls]

So, some of you used to be able to "tolerate" gluten pre-diagnosis, but post-diagnosis and on a gluten free diet you became suddenly super toxic by it? My only symptom is excessive gas and bloated belly, which is because of the gas...so, what were the reasons some of you decided to figure out your ailment?

I found out I was gluten intolerant after my daughter, who did have GI symptoms, tested positive by Enterolab. I tested the rest of the family and we were also positive. I think my mood problems are worse than before if I've had gluten but it might be I'm just used to feeling good so I don't deal with it as well.

[chrissy]

it is the aga antibody that can be raised in other conditions.

[Rachel--24]

In the end none of the tests are a perfect science. If they were 100% reliable there would be no reason to question them....and we would all have a definate answer.

Many things can skew results...such as IgA deficiency, not enough gluten in diet, etc.

The biopsy is clearly not a reliable method of testing.

Positive IgG or IgA alone can be due to other conditions....although, in my opinion anyone who is producing antibodies should be off gluten....with the understanding that there may be other issues involved.

Positive IgA and tTG.....very specific to Celiac...regardless of whether damage is found in biopsy.

Positive EMA...specific for Celiac.

I think dietary response holds the most weight. If a person tests negative in ALL tests but clearly has their symptoms resolve on the diet...in my opinion thats as clear as it gets.

Likewise, if a person does not find improvement on the diet....other things should be looked into. This does not mean ignore the Celiac diagnosis (assuming there is one)....it simply means something else could be occurring alongside Celiac.

There may be a gluten intolerance (which is not Celiac) due to other conditions in the body...in this case its unlikely you would have a positive tTG. I would not question a positive serum tTG along with improvement on diet.

The bottom line is that the answers are not always clear. Also, unfortunately Dr.'s sometimes make mistakes. Its very important to always have copies of test results....and a good understanding of what they mean.

[Nancym]

I don't know if you use dairy products at all but most celiacs are lactose intolerant until their villi heals. Some of us are also intolerant of casein (milk protein) and so we have to stay off it for life.

Personally I find I do best on a Paleo style diet, one where we don't eat any grains at all. It might be tough being a vegetarian though... I don't think you'd end up with complete protein from anything.

It took me a year to get my intestines stabilized. I give a lot of credit to being gluten-free and CF, of course, but even after that I had a lot of irritation and found more foods causing problems. The Paleo diet worked quite well with that, in addition to Kefir that I make from coconut milk. I think getting good flora back into the gut has been an enormous help to me. Frankly regular probiotics never worked for me, but kefir seems to be almost magical.

I also think Glutamine supplements helped (4-5g a day when gut is behaving badly).

Used to be any little forray off my paleo diet would get my gut to misbehaving, now I can stray here and there and not pay for it by spending excess time on the toilet.

I also look for signs from my body that it isn't liking the food I send down the chute. Any stomach discomfort or gas get noted and that food is put on the suspicion list.

[gabby]

Hi,

I had a heck of a time with vitamin supplements when I first went gluten-free. Maybe check out your brands and call the manufacturer to get the scoop on the source of the ingredients.

I also had mega trouble with soy and dairy products.....and had to eliminate vitamin supplements that contained these things too.

Other things to consider:

-cross contamination from pots and pans and things like toasters, toaster ovens, etc that used to be used for gluten-containing foods

-bulk foods (many do not give ingredients)

-certain dry-roasted nuts that have been sprayed with a wheat-based coating to keep them from sticking

-other snacks (like licorice, gummy chews, etc) that might be coated with a wheat-based dusting to keep them from sticking

-organic natural butters that list 'dry roasted nuts' as the only ingredient. Call the manufacturer on this to see if the dry roasting process involves any gluten-containing ingredients (this happened to me, so I know what I'm talking about)

-toothpaste

-restaurants that cook their steamed veggies in the pasta water (this happened to me too)

-kissing someone who has just eaten a sandwich!

hope this helps. And hope you are feeling better soon.

[gfpaperdoll]

I would just like to say it sounds like Gabby & Nancy M are posting along my same train of thought. Anyone that has only been gluten-free for a month or so is probably in all likely hood not really totally gluten-free yet, it takes a while to sort it all out. This is especially true if there are people living in the house that are eating gluten. There is no way that you are not getting cross contaminated from that. Also, someone that is "not sure they have it" has not done a lot of research and probably not tossed the wooden spoons, cutting boards, teflon pans, cast iron pans, toaster, baking pans - on & on...

You also have to check your meds. & yes, give up the things that you are consuming that are bad for you like colas, artificial sugar...

I think that everyone should give up dairy at first then if you can, add it back in - slowly.

Then there is the whole issue of eating the "gluten free" crackers, breads, muffins etc, most all that stuff has some form of cross contamination and or is not tolerated by a "disgestively compromised" person.

Recommended reading "Gluten Free for Dummies" & "Dangerous Grains"

The reason we have support groups and these forums is that it is not easy - but the reward of energy & good health is soooooo worth it - that is why we try to help others where we can. Because we were there when our brains were so messed up and our bodies were so sick and we could not think strsight much less order a book to read about some obscure subject that we had never heard of & all anyone in the family wants you to do is go to the doctor & get some more pills.