No To Celiac

[taz sharratt]

just been to the hospital for my appoitment with the doc, really gutted!!! he said my celiac test was negative. im dumbfounded! he said theat i had 2 tests and the first was the iga was raised but the ttg test for celiac was negetive below 10. he said that cos ive had a posotive feedback from the gluten-free diet he wants to double make sure and do the endoscopy, in order for the test to be correct i have to go back on gluten for 8 weeks!!! ive said ide do the test and go back on gluten but im scared, really scared, not of the D or the C or the cramps and bloating but the thrush is just so hard to bare, before i went gluten-free i had thrush constantly i would have it one weeks go the noext and on and on and then the times when i would get it 4 weeks staight, its just so bloody painfull, there was days when i couldnt walk or even get out of bed, the thought of going back to that is makeing me really upset im crying as i type. i got to do it i know but finding it hard to cope. the other thing is as well as wehen i was leaveing the doctors assistant said she thought it was IBS i was diagnosed with that 10 years ao, then she said that even if the reults come back negetive from the biopsy i may still have wheat intolerance which would explain the improvement on the gluten-free diet. oh and the doc said that the results couldnt be a fslse negetive a they are 90% accurate and only a moderate of people evaide the test but just incase i was one of those he was gonna do the endoscopy. sorry im not makeing much sense im just blown away. im really ariad at the moment.

[Guest nini]

if you feel better off gluten, honestly it doesn't matter if it's Celiac or Gluten intolerance, it's really the same thing, and the Dr.s that are still recommending the biopsy are doing this based on outdated methodology.

In my opinion, do not put yourself through any further testing to satisfy a Dr.s morbid curiosity. You do not need permission to be gluten-free, nor do you need to have a dx of Celiac on your permanent record to continue to post here for support.

You know that on gluten you feel terrible, off gluten you feel better. Case closed.

[kbtoyssni]

I agree with nini. You don't need an official dianosis to go gluten-free. You know you feel better not eating gluten, why should you have to make yourself sick for two months and then re-start the healing process? I don't have an official diagosis, either. Once I figured out gluten was making me so sick, there was no way I wanted to prolong getting well again. Life's too short to waste it eating gluten.

[Jestgar]

I recently read a paper in which they evaluated the tTg test and found that in people with less than total destruction of the intestine, the tTg results are only 60% specific. This means that 40% of people with partial intestinal destruction have flase negative tTg results.

[ElizabethN]

My doctor also wanted me to eat gluten again for 2 months so he could test me. At the time, I debated doing it but now I am so glad I didn't. I had already wasted enough years of my life feeling miserable, I had no desire to spend another minute sick. If you feel better on a gluten free diet then it seems to me you already know all you need to know, despite what the tests may indicate.

They too have tried to tell me for years that I have IBS, but when I cut gluten out of my diet my symptoms somehow completely dissapear...hmmm. I think IBS can be a total cop out for a doctor who feels the need to give a diagnosis- just so they have something to write down on their charts and can feel better that they are providing you with "answers". Perhaps you can tell I still feel bitter about all of this, but it is frustrating dealing with the medical profession sometimes- and if I were you I wouldn't put yourself through any more of it than you really have to.

[L.A.]

Big hug to you! I had a positive blood test result for celiac disease and a negative biopsy--I also refused to go back on gluten for the biopsy which ticked the Dr off royally but I did not want to go back to that hell for anyone. I hate how the medical profession tries to manipulate us. You do what you're comfortable dealing with.

[CarlaB]

I went back on gluten, the endoscopy still came out negative. My blood work was also negative. I got tested by Enterolab and everything was positive. If I even get a little gluten, I get very ill for a week or two. I definately have it! I wouldn't go on the gluten again for a test to make a doc more comfortable with his diagnosis. If you feel better, that's clinical proof enough (and that was from my ob/gyn!).

Plus, my understanding is that you need more like three months of a gluten challenge. I only did six weeks and I couldn't even take care of my family during that time.

[Guest southgoingzax]

Hi,

I'm so sorry you feel pressured by your dx. I think everyone here has a valid point - if you feel better being gluten-free, and your symptoms have disappeared, do you really need an endoscopy? It would only make sense if there is a lot of damage, to the point where there are lesions, but you would know that in 3 months or so anyway, if you were gluten-free and your symptoms still weren't abating. You need to do what you are comfortable with, but I am with everyone else who has posted - you don't really need a scope to tell you gluten is bad for you. If you can live without a "firm" diagnosis, I would suggest politely telling your doctor you have changed your mind.

I hope you feel better soon,

zax

[rinne]

I agree with the many good points above about trusting yourself.

My bloodwork was negative and I will have an endoscopy at the end of September but I am not eating gluten so I was not surprised by the bloodwork and I do not expect that the endoscopy will show damage. I will proceed with it and other tests not to prove I am a Celiac but to elimate other possible problems.

I have known for too many years that wheat is a problem but until I found this board I didn't understand about gluten. Since I cut gluten out there have been only positive changes in every aspect of my health.

I wish you all the best in making this decision.

[taz sharratt]

ok, calmed down a bit,had to go for a run to get my head out of the shed . cos ive got this milk prob they think its down to thew milk and not the gluten which is why im concidering the test, what f it is just the milk? had a proper digestive biscuit earlier which had whaet and gluten in it, about an hour in to my workout i felt a massive burp come up with the after taiste of the bikky, havent had anything else so far but im worried im gonns make myself sick just worrying about it at the mo i feel a right fraud, like i was fakeing the whole time of being celiac and the doctors have made me think its all in my mind or worse. i feel like im going off my trolley, seriously! my head hurts at the mo even thinking about it, cofused about the iga, he said it maybe i had an infection and had nothing to do with celiac, does anyone know about twhat these levels actually mean and can the test really be as acurate as he says it is. thanx for any help.

[oceangirl]

I agree with the many good points above about trusting yourself.

My bloodwork was negative and I will have an endoscopy at the end of September but I am not eating gluten so I was not surprised by the bloodwork and I do not expect that the endoscopy will show damage. I will proceed with it and other tests not to prove I am a Celiac but to elimate other possible problems.

I have known for too many years that wheat is a problem but until I found this board I didn't understand about gluten. Since I cut gluten out there have been only positive changes in every aspect of my health.

I wish you all the best in making this decision.

Just another voice: Trust yourself. I had positive bloodwork, negative biopsy. Enterolab says positive for gluten intolerance genes. I, too, could not manage putting the gluten back in for the biopsy-too painful, too sick. Whatever you want to name it, you know gluten is not good for you. Feel better.

lisa

Just another voice: Trust yourself. I had positive bloodwork, negative biopsy. Enterolab says positive for gluten intolerance genes. I, too, could not manage putting the gluten back in for the biopsy-too painful, too sick. Whatever you want to name it, you know gluten is not good for you. Feel better.

lisa

Oh yes, and doctors have thrown the "IBS" diagnosis at me since I was 13.

[Guest nini]

it's been proven that most Celiacs are initially lactose intolerant UNTIL the villi begin to heal. Some continue to be lactose intolerant as well but for me I was able to reintroduce dairy after about six months gluten-free.

trust yourself, you do not need a Dr. to determine if it's dairy or gluten or both... you are in control of your diet and you can keep a food journal. Why do Dr.s think they are gods? Because we give them that power. Take back your power and take your diet down to the most simple diet and then slowly reintroduce things one at a time, keep track of any reactions or lack of reactions and look for any patterns. You can do this yourself and it is a much healthier way of eating anyway.

[taz sharratt]

it's been proven that most Celiacs are initially lactose intolerant UNTIL the villi begin to heal. Some continue to be lactose intolerant as well but for me I was able to reintroduce dairy after about six months gluten-free.

trust yourself, you do not need a Dr. to determine if it's dairy or gluten or both... you are in control of your diet and you can keep a food journal. Why do Dr.s think they are gods? Because we give them that power. Take back your power and take your diet down to the most simple diet and then slowly reintroduce things one at a time, keep track of any reactions or lack of reactions and look for any patterns. You can do this yourself and it is a much healthier way of eating anyway.

i know what you say makes perfect sense but im scared, scared of my gp saying its not been proven tracey that you are celiac, scared of peoples comments, most i want my hubby to have something concrete that says i have this, he never said it but i think he doesnt realllt think i have it iether so i want it for him and for the kids cos if i have it in writeing then the boys will be able to have a smoother time of it than me as there is a known celiac in the family and the doctor will test them for it, i believe she wont do the test if im negetive or wont do the biposy. im doubting everything i know, my gutt instinct is telling me i have celiac but my brain it saying but and what if, dont know which one to trust. feel sick!

[L.A.]

i know what you say makes perfect sense but im scared, scared of my gp saying its not been proven tracey that you are celiac, scared of peoples comments, most i want my hubby to have something concrete that says i have this, he never said it but i think he doesnt realllt think i have it iether so i want it for him and for the kids cos if i have it in writeing then the boys will be able to have a smoother time of it than me as there is a known celiac in the family and the doctor will test them for it, i believe she wont do the test if im negetive or wont do the biposy. im doubting everything i know, my gutt instinct is telling me i have celiac but my brain it saying but and what if, dont know which one to trust. feel sick!

Taz: If you need this test to set your mind at ease, then do it. It sorta seems you're leaning that way, somake the decision and hopefully you'll feel better and more calm. Good luck.

[ravenwoodglass]

i know what you say makes perfect sense but im scared, scared of my gp saying its not been proven tracey that you are celiac, scared of peoples comments, most i want my hubby to have something concrete that says i have this, he never said it but i think he doesnt realllt think i have it iether so i want it for him and for the kids cos if i have it in writeing then the boys will be able to have a smoother time of it than me as there is a known celiac in the family and the doctor will test them for it, i believe she wont do the test if im negetive or wont do the biposy. im doubting everything i know, my gutt instinct is telling me i have celiac but my brain it saying but and what if, dont know which one to trust. feel sick!

Why do doctors do this to people. I have to agree with other that say to just get yourself gluten free. For right now don't even think about what other peoples opinions are. You need to heal. Once you have and your family realizes the difference in you that will be proof enough. For the first few months stay away from dairy, although you may be able to tolerate yogurt and hard cheeses in small amounts. Many around me were sceptical when I was first diagnosed. They are not any more. All it took was a year of no copays and no meds for my hubby and those around watched me come back to life physically and mentally. Trust your gut and your instinct and please get on the diet.

[penguin]

Well, I'll take a slightly different angle on this.

I'm nearing the end (thank God) of a 3 month gluten challenge for the biopsy. I didn't have doctors telling me that I had to have the biopsy, but I need to have it for myself to know that I did all the testing I could. I'm unusual in that my doctors pretty much agree that I have gluten intolerance if not celiac based on dietary response after inconclusive bloodwork. I don't think I could take myself seriously for life without the biopsy (even if it's negative), and my family will certainly have an easier time taking me seriously. Hell, even my mom is counting down the days until my biopsy so I can be gluten-free, and she was quite skeptical before. I also want to know what kind of damage is being done.

If you feel you need it for your own peace of mind, then do it. Otherwise, if you know you feel better gluten-free and you're comfortable with not necessarily having your doctor back you up on it, then don't do it! It's a personal decision, and I hope you come up with one that you're comfortable with!

[kbtoyssni]

i know what you say makes perfect sense but im scared, scared of my gp saying its not been proven tracey that you are celiac, scared of peoples comments, most i want my hubby to have something concrete that says i have this, he never said it but i think he doesnt realllt think i have it iether so i want it for him and for the kids cos if i have it in writeing then the boys will be able to have a smoother time of it than me as there is a known celiac in the family and the doctor will test them for it, i believe she wont do the test if im negetive or wont do the biposy. im doubting everything i know, my gutt instinct is telling me i have celiac but my brain it saying but and what if, dont know which one to trust. feel sick!

I do think that the only reason to get tested is if you need proof that you have celiac. Some people do need to have the official diagnosis to commit to gluten-free. But what happens if your biopsy comes back negative (which it very well could)? Will you still go gluten-free? I get the feeling that you'd still want to, but how is your husband going to deal with it? Maybe he should read the book Dangerous Grains. It will certainly give him a sense of how underdiagnosed the disease is and may help him to understand why you need to do this. Another alternative is Enterolab. You do not need to be eating gluten to get a diagnosis and from what I've read here, it seems like it's a lot more accurate in diagnosing celiac and gluten intolerance than a biopsy is.

[Guest nini]

the proof will be in how your health improves once you are gluten-free. Even with my positive dx, my hubby was skeptical at first, my own mother didn't take me seriously (guess she thought it was another case of me being a hypochondriac)... but once my health improved so dramatically, no one around me doubts the dx. Do what you have to, but I'm sticking to my previous advice.

[Aerin328]

You do not need to be eating gluten to get a diagnosis and from what I've read here, it seems like it's a lot more accurate in diagnosing celiac and gluten intolerance than a biopsy is.

Is this true?

I've been off gluten for about 1 month, and I'm considering getting more testing to be thorough. If you're not eating gluten, how is Enterolab able to confirm diagnosis? (And how do you get testing done by them? do you need to drive to a major city?)

[CarlaB]

Is this true?

I've been off gluten for about 1 month, and I'm considering getting more testing to be thorough. If you're not eating gluten, how is Enterolab able to confirm diagnosis? (And how do you get testing done by them? do you need to drive to a major city?)

What kind of testing have you had? To use Enterolab, you go to www.enterolab.com and order. They will send you a box with some stuff in it, you will put a stool sample in the container, put the container in the box, and a swab if you do the gene testing, and DHL comes to pick it up. They will have the results to you in about two weeks. Very easy.

All my testing was inconclusive because I had been avoiding wheat for 3 years and had been mostly gluten-free (except for gluten I didn't know about) for four months before testing. My six week gluten-challenge was apparently not enough, but at least I found out that I don't have cancer (I was losing weight so fast that's what I thought was wrong) and no damage that was easy to find. I was completly gluten-free for two months after my gluten challenge and Enterolab still found I was sensitive.

[Aerin328]

What kind of testing have you had?

The usual blood panel. Only result that was positive was gliadin IgG (result 57, max norm 20). One doc said this meant nothing; another said he believed I was celiac based on my symptoms and this number together. I'd like to get another confirmation if possible...

I've been gluten-free for 4 weeks, and "mostly" gluten free for another 2 before that. Do you think the labwork would still come out positive via Enterolab??

Also, is it expensive?

Thanks!

[CarlaB]

The usual blood panel. Only result that was positive was gliadin IgG (result 57, max norm 20). One doc said this meant nothing; another said he believed I was celiac based on my symptoms and this number together. I'd like to get another confirmation if possible...

I've been gluten-free for 4 weeks, and "mostly" gluten free for another 2 before that. Do you think the labwork would still come out positive via Enterolab??

Also, is it expensive?

Thanks!

Price varies based on the tests you order. You can look over the prices on their website without going to the "to order" page, but I can't think of how off the top of my head. Let me know if you have trouble. I got the gene test, and the gluten panel including casein and I think it was around $500, but I know you can pick and choose which tests you want.

I was completely gluten free for two months prior, had a six week gluten challenge prior to that, and six months before the challenge had been gluten-free. I also ate very little wheat for 3 years. So, you should have no problem with the Enterolab tests.

[BBadgero]

Maybe there is another option? I myself was fortunate enough to have a GI doc who did the biopsy first thing as I just started to have the symptoms (and btw - came back negative in 6 spots).... but I wonder, does anyone know how long it takes for the villi heal after going gluten-free? Maybe a biopsy is still an option along with staying gluten-free? If the damage is done, then the biopsy would still pick it up??? Just food for thought, but please, if someone knows for sure, please lets us know.

[Rikki Tikki]

if you feel better off gluten, honestly it doesn't matter if it's Celiac or Gluten intolerance, it's really the same thing, and the Dr.s that are still recommending the biopsy are doing this based on outdated methodology.

In my opinion, do not put yourself through any further testing to satisfy a Dr.s morbid curiosity. You do not need permission to be gluten-free, nor do you need to have a dx of Celiac on your permanent record to continue to post here for support.

You know that on gluten you feel terrible, off gluten you feel better. Case closed.

Just wanted to add that I agree

[ElizabethN]

the proof will be in how your health improves once you are gluten-free. Even with my positive dx, my hubby was skeptical at first, my own mother didn't take me seriously (guess she thought it was another case of me being a hypochondriac)... but once my health improved so dramatically, no one around me doubts the dx. Do what you have to, but I'm sticking to my previous advice.

When I was debating about being tested or not, my biggest fear was that if I didn't do it no one would believe me or take it seriously that I needed to follow the diet. But happily this wasn't the case at all, they were all just thrilled I finally found a way to feel good again. Everyone has been really supportive, even without an "official" diagnosis. Those that love you should support whatever decision you make, and once your health starts improving, like nini says- then they can't really doubt the dx.