Results Negative, Family History, And Symptoms

[Hall100]

Hello all

I was hoping to hear your thoughts - I have been suffering from various symptoms for quite some time (bloating esp. after eating, diarrhea, gas, stomach pain). My sister has c/d and has been following a gluten-free diet for several years. As my symptoms were getting worse, I decided to speak with my naturopath, who herself is celiac. She suggested going gluten-free for 5 weeks, then trying gluten. Well, I did, and felt terrific. That was enough for me, but then decided I should have the tests done. My doctor said the blood work should come back positive, even if I had been gluten-free, and to have some gluten for a few days before the test. After doing this (and feeling crappy), the blood work came back negative - everything was within normal ranges. I am now being referred to a specialist, and in the meanwhile my doctor said to remain gluten-free. I'm feeling better, but not as well as before I added gluten back into my diet for the tests.

Aren't I just going to have to add gluten back in, assuming they want to do more testing? Should I just try going back on gluten until then (I understand that you must be eating gluten for a couple of months before it will show up on a scope).

As well, I've read quite a bit of having more than one auto-immune disease. I have MS, and am taking medication for this.

C/D seems to make sense to me. Even my doctor, before the results came in, said it wasn't a 'rocket-science' diagnosis to make.

[danikali]

I'm also new to this whole thing, and am still in the testing stages myself, but I'm wondering why your doctor told you to do the gluten-free diet before the testing. From what I am learning, you have to be back on gluten for A LOT more than a few days to get an accurate result. Especially if you were off of it for a long time. Plus, if you were feeling 100% better, why would they want to mess with it?

[Hall100]

Ah - the wonderful relationships between naturapaths and traditional medicine. It was the naturopath who told me to go off gluten in the start, and my gp who did the blood tests. I guess the problem now is that I'm still not feeling 100% (even with being off the gluten for almost 4 weeks). I'm wondering if this could be something else, what with the negative tests and such. Its the family history that's throwing me - also, I don't seem to have the 'classic' symptoms (underweight, neurological associations).

[danikali]

Ah - the wonderful relationships between naturapaths and traditional medicine. It was the naturopath who told me to go off gluten in the start, and my gp who did the blood tests. I guess the problem now is that I'm still not feeling 100% (even with being off the gluten for almost 4 weeks). I'm wondering if this could be something else, what with the negative tests and such. Its the family history that's throwing me - also, I don't seem to have the 'classic' symptoms (underweight, neurological associations).

<{POST_SNAPBACK}>

Well, I would like to add that I am pretty sure "classic symptoms" don't really apply these days. I was diagnosed with C-IBS, constipation dominant, although it alternates. And the doctors told me that Celiac disease only causes diarrhea, so they wouldn't test me for it. Well, here I am now with a million more symptoms that IBS experts suggest is a sign of something more serious. Muscle, joint aches, back pains, tingling feet and hands, migranes, fatigue, etc. And the more people I have discussions with on this forum, the more I find people diagnosed with celiac and gluten intolerant with no diarrhea at all!

Anyway, I think it is pretty obvious you have some kind of gluten sensitivity going on. Have you ever heard of Enterolab? They test your stool, not your blood, which is supposed to be more sensitive, which also means that you do not need to be consuming gluten to take the test and get an accurate result.

Here is the site:

Open Original Shared Link

you might want to think about that since you have already taken your blood tests. It might give you a piece of mind and you won't have to go back to eating food that is probably poisening your body. Good luck!

[kabowman]

My celiac disease dx was negative, I never had any blood tests and refused to go on a gluten challenge because I was finally feeling better.

My maternal grandmother was gluten intolerant, a maternal aunt is gluten intolerant. My mother and sister have digestive problems but refuse to try the gluten-free lifestyle. My oldest son's blood test was negative for celiac disease but he has stomach problems too.

For me, it was a personal decision - I felt better, then decided I really didn't need the lable. I found out the family history AFTER I fixed my diet. My docs (pcp, allergist, dermatologist, gi) all agree - I am intolerant and will never be able to eat these foods again. They were all glad that I had figured out the problem and felt better.

I even met with a dietition who knew about celiac disease and what to avoid for gluten, however, I knew as much or more than she did just by my own research.

[danikali]

My celiac disease dx was negative, I never had any blood tests and refused to go on a gluten challenge because I was finally feeling better.

My maternal grandmother was gluten intolerant, a maternal aunt is gluten intolerant. My mother and sister have digestive problems but refuse to try the gluten-free lifestyle. My oldest son's blood test was negative for celiac disease but he has stomach problems too.

For me, it was a personal decision - I felt better, then decided I really didn't need the lable. I found out the family history AFTER I fixed my diet. My docs (pcp, allergist, dermatologist, gi) all agree - I am intolerant and will never be able to eat these foods again. They were all glad that I had figured out the problem and felt better.

I even met with a dietition who knew about celiac disease and what to avoid for gluten, however, I knew as much or more than she did just by my own research.

<{POST_SNAPBACK}>

Honestly, as soon as I am done with these test in the next couple weeks (because I already have them lined up; spend much $ and everything), that is going to be my dianosis too. I was COMPLETELY gluten free for 2 days, and felt PERFECT! But dummy me wanted a diagnosis, and now I feel like CRAP CRAP CRAP every single day! I can't wait to start my new life!

[danikali]

that is going to be my dianosis too.

I mean that is going to be my "attitude" too.

[nettiebeads]

Hello Hall100 and welcome to the forum -

Well, I think your naturopath was correct, but your dr was mistaken in how long you should have been on gluten before the test. But the fact that you were on gluten, went gluten-free, felt better, went back on gluten and felt worse is a positive dx for celiac disease - the diet challenge. That's how my gp did it for me 9 yrs ago. That's the only testing he ever did for me, and I'm not about to get any other testing done. Well, if I had some extra cash I'd do the DNA because I'd want to know.

Anyhow, going back on the gluten re-damaged your intestines so now it's like starting all over again. Stick with it, I'm sure you'll be better in time.

[Rachel--24]

Hello all

I was hoping to hear your thoughts - I have been suffering from various symptoms for quite some time (bloating esp. after eating, diarrhea, gas, stomach pain). My sister has c/d and has been following a gluten-free diet for several years. As my symptoms were getting worse, I decided to speak with my naturopath, who herself is celiac. She suggested going gluten-free for 5 weeks, then trying gluten. Well, I did, and felt terrific. That was enough for me, but then decided I should have the tests done. My doctor said the blood work should come back positive, even if I had been gluten-free, and to have some gluten for a few days before the test. After doing this (and feeling crappy), the blood work came back negative - everything was within normal ranges. I am now being referred to a specialist, and in the meanwhile my doctor said to remain gluten-free. I'm feeling better, but not as well as before I added gluten back into my diet for the tests.

Aren't I just going to have to add gluten back in, assuming they want to do more testing? Should I just try going back on gluten until then (I understand that you must be eating gluten for a couple of months before it will show up on a scope).

As well, I've read quite a bit of having more than one auto-immune disease. I have MS, and am taking medication for this.

C/D seems to make sense to me. Even my doctor, before the results came in, said it wasn't a 'rocket-science' diagnosis to make.

<{POST_SNAPBACK}>

Since you were already gluten-free before the bloodtests that would have affected the results of the test. Even though you went back on gluten for a short time it was likely not enough to show a positive. A positive response to the diet can be just as conclusive as the tests but I think the doctor should have let you know that tests would be innacurrate following a 5 week gluten-free diet. That way you could have made a decision about whether or not to have bloodtests.

My bloodtests were neg. after only 2 weeks gluten-free. My doctor never told me I needed to be eating it for the tests.

After 4 months on a (mostly) gluten-free diet I tested positive with Enterolab and positve for gluten sensitivity genes. I went completely gluten-free and 2 months later had a biopsy with no gluten challenge. It was obviously negative which was expected. I would never do a gluten challenge at this point...its been too long and my body is extremely sensitive to it now. Rather than suffer needlessly for 3 months for a biopsy (which may be neg. anyway) why not just stay on the diet and feel better? You can get gene tests to see if you have a celiac gene. The biopsy cant rule out celiac if its negative. You can still have celiac disease and not have a positive biopsy.

[aikiducky]

One more thing... a lot of people seem to first feel great when they go gluten free, then a few weeks in, start to feel crappy again, then slowly improve until they feel really well after maybe a year or so. So it sounds like your just about on schedule, if you first felt great and now a bit less so.

Pauliina

[Claire]

I personally feel that any doctor suggesting a gluten challenge is making a grave error and unnecessarily stressing the patient's immune system not to mention risking cell and neuron damage.

I have been told (by a neurologist) that I would need to be on a gluten inclusive diet for at leat six months to be sure that the test results were not a false negative. He said he was absolutely against any thought of such a challenge. I have an as yet unconfirmed diagnosis of cerebellar ataxia and he feels that gluten is bad news in the presence of neurological problems.

I opted for a genetic test for Celiac. It was negative. I have yet to be tested for non-celiac gluten sensitivity. Whatever testing I have done will definitely be by some means not requiring the gluten challenge.

Making yourself sick to prove a point seems counterproductive to me. Claire

[jmfrisch]

After 4 months on a (mostly) gluten-free diet I tested positive with Enterolab and positve for gluten sensitivity genes.

What does Entrolabs actually search for? I have had 2 neg bloods, neg biopsy when I was young, and DQ2 & DQ8 negative DNA from kimball genetics. What is DQ1 and DA3? The kimall genetics said it is "extremely unlikey you have celiac". But..I have been gluten-free for 3 years now, my Father is very sensitive to gluten and diagnosed celiac about 50 years ago when he was 2.

After the DNA test, I though ,maybe it is all in my head (as I do every few month of being well) and gave a big bowl of noodles a shot. Geesss...am I paying for it. Migranes followed from 2 days later for a week. Today I am finally getting better..

Could it be something else that just happens to be included with the wheat products? Has anyone every worked this out? I get all the same sypmtoms as my Father except being chained to the toilet after gluten ;-)

[Claire]

What does Entrolabs actually search for? I have had 2 neg bloods, neg biopsy when I was young, and DQ2 & DQ8 negative DNA from kimball genetics. What is DQ1 and DA3? The kimall genetics said it is "extremely unlikey you have celiac". But..I have been gluten-free for 3 years now, my Father is very sensitive to gluten and diagnosed celiac about 50 years ago when he was 2.

After the DNA test, I though ,maybe it is all in my head (as I do every few month of being well) and gave a big bowl of noodles a shot. Geesss...am I paying for it. Migranes followed from 2 days later for a week. Today I am finally getting better..

Could it be something else that just happens to be included with the wheat products? Has anyone every worked this out? I get all the same sypmtoms as my Father except being chained to the toilet after gluten ;-)

<{POST_SNAPBACK}>

DQI and DQ3 are related to non-celiac gluten sensitivity - a genetic disorder every bit as serious as Celiac (especially related to neurological damage)

If you did a genetic swab test for Celiac it would be accurate. A blood test would not be if you have been gluten-free for even a short time as the antibodies begin to decrease the minute you remove gluten from the diet.

"Something else" could be yeast.

It sounds very celiac - or gluten sensitivity - to me. The latter would not likelyhave the frequent necessary room visits. Claire

[jmfrisch]

If you did a genetic swab test for Celiac it would be accurate.

"Something else" could be yeast. 

It sounds very celiac - or gluten sensitivity - to me.  The latter would not likelyhave the frequent  necessary room visits.  Claire

<{POST_SNAPBACK}>

Hmm. I guess that means I ain't celiac. Guess I'd better start looking for something else....

Wouldn't an allergic reaction show up more or less straight away? It usually takes 2 days or so for me to get ill.

Also, how does gluten sensitivity differ to celiac? Do you know what the affect is on the body?

[jnclelland]

Would a blood test (which came back negative) be accurate if it was taken when I had been off wheat for 6 weeks, but still eating barley bread on a daily basis? (I know barley has less gluten than wheat, but I can't for the life of me find a source that says how *much* less.)

Jeanne

[Claire]

Hmm. I guess that means I ain't celiac. Guess I'd better start looking for something else....

Wouldn't an allergic reaction show up more or less straight away? It usually takes 2 days or so for me to get ill.

Also, how does gluten sensitivity differ to celiac? Do you know what the affect is on the body?

<{POST_SNAPBACK}>

I responded to you earlier and will do so again.

I do not have celiac disease. I am as yet undiagnosed for non-celiac gluten sensitivity. I am being evaluated for the cause of neurological damage that has happened related to whatever it is that I do have.

I have a confirmed diagnosis of Type II, Delayed Food Reactions that includes all grains except oats and rice.

So I come to your questions from my own experience.

You are right about allergic reaction. An allergic reaction is immediate. A food sensitivity has a delayed reaction - from hours to even days.

Some might dispute my take on gluten sensitivity. I see it as the other side of the celiac coin.

I believe that both should be called either celiac or gluten sensitivity. There should not be two separate entities. Both are genetic in origin. Both are a reaction to gluten. Both cause damage to the body. Both can be eliminated by the elimination of gluten. Why is this called two separate things?

The experts say that because there is no intestinal damage with gluten sensitivity then it cannot be celiac. However there are many celiacs who have no villi damage. They have positive blood work or a positive gene test - so they are called Celiac.

Gluten sensitivity is every bit as damaging as celiac disease - maybe more so because it is gluten sensitivity that produces most of the neurological damage seen in gluten related disorders. Certainly some celiacs have neurological damage but the data shows it is higher in gluten sensitivty cases.

It is often spoken of as a lesser issue than celiac disease. I do not believe this is true. There is tons of information available to show that it is every bit as serious and should never be taken lightly.

There is a distinction between a Delayed Food Reaction to wheat or other gluten containing grains and gluten sensitivity. The latter is genetic - as Celiac is. The former is not.

I certainly would be tested for Gluten sensitivity if you have not been. If that is negative then test for Delayed Food Reactions. If you are patient you can do that for yourself if you just want to check on gluten. Just go gluten-free totally for a couple of weeks and then bring on the bread and the pasta and see what happens.

Hope this helps. Claire

[tofu8grrrl]

The biopsy cant rule out celiac if its negative. You can still have celiac disease and not have a positive biopsy.

Hmm...this is very interesting. Thank you for sharing this info. The doctor I talked to seemed to think that my biopsy was conclusive--I just had a biopsy come back negative, but my symptoms got much better after my test when I went gluten-free & have been better for the last 2 and 1/2 weeks of gluten-free diet. I suppose it's also possible that I have a non-Celiac gluten sensitivity. Either way, the diet is working, so I'm staying on it. I kind of would like to have the enterolab tests, but don't have the $ right now. Maybe I just won't worry about that until I think about having kids when the genetic factor will really actually matter & it may be worth it to find out for sure. Anyway, thanks for the info! You always have a lot of good information to share in all the posts I've seen.

[VydorScope]

Hmm...this is very interesting. Thank you for sharing this info. The doctor I talked to seemed to think that my biopsy was conclusive--I just had a biopsy come back negative

celiac disease Bisopys are NEVER EVER negative, they are NON-POSTIVE. Theres a big difference there that docs need to learn to be clearer on. A postive biopsy is conclusive, a non-postive biopsy means that its less likly that you have celiac disease. This comes upenough times I should cut/paste the long exmplantion I wrote up a while back detailing out how a person with celiac disease could, and prbly often does, have a non-postive biopsy.

[Rachel--24]

celiac disease Bisopys are NEVER EVER negative, they are NON-POSTIVE. Theres a big difference there that docs need to learn to be clearer on. A postive biopsy is conclusive, a non-postive biopsy means that its less likly that you have celiac disease. This comes upenough times I should cut/paste the long exmplantion I wrote up a while back detailing out how a person with celiac disease could, and prbly often does, have a non-postive biopsy.

I agree, I think more Celiacs would come back with negative (or non-positive as you put it ) biopsy results than positive. I think this is another reason so many are left undiagnosed. The tesing is just not good enough yet. The biopsy should not be considered the "gold standard" anymore. IMO.

[KaitiUSA]

I agree, I think more Celiacs would come back with negative (or non-positive as you put it ) biopsy results than positive. I think this is another reason so many are left undiagnosed. The tesing is just not good enough yet. The biopsy should not be considered the "gold standard" anymore. IMO.

I agree that biopsies should not be considered "gold standard" anymore. I am seeing more and more doctors go with the complete blood panel for diagnosis.

It only can rule celiac in...it can't rule celiac out. If you have beginning stages or have sporadic damage they can easily miss it. I am not a fan of them myself. The only point of getting one is possibly to see how much damage you have got already for informational purposes.

[tofu8grrrl]

Thanks everyone. This really helps! I think I am just going to listen to my body & keep doing the diet because I feel so much better on it & then if I ever get to a point where the genetics are a factor (kids or a family member who shows symptoms), I might look into the Enterolab tests, but otherwise I think I have my answer. I really appreciate the feedback--It's hard to navigate the diagnosis process when the doctors don't even really know what they are talking about or looking for!

[CMCM]

Thanks everyone. This really helps! I think I am just going to listen to my body & keep doing the diet because I feel so much better on it & then if I ever get to a point where the genetics are a factor (kids or a family member who shows symptoms), I might look into the Enterolab tests, but otherwise I think I have my answer. I really appreciate the feedback--It's hard to navigate the diagnosis process when the doctors don't even really know what they are talking about or looking for!

celiac disease is just a somewhat of a mysterious thing. My mom was diagnosed at 48 or so. Most of her life she had been "sensitive" but she didn't feel is was anything remarkable. Whatever affected her, she mostly was able to ignore. After a hysterectomy at 42, full blown celiac disease kicked in but it wasn't diagnosed for many years. Whether or not she had intestinal damage prior to it being full blown is another question. Perhaps so and she didn't know it. Or perhaps the damage occurred in those years while no one could figure out what was wrong with her. The big question seems to be whether or not some sort of vague gluten sensitivity, which one can obviously live with fairly successfully, can later turn into serious celiac disease which then must be figured out. This is the challenge for all of us, even those who test negative. And ultimately, if you feel good by doing the gluten-free diet, then why fight that? I mean, so what if you tested negative....if you go back on gluten or continue eating it, you have made the choice to feel bad in all these various ways. If elimination of gluten stops the problem, that's the solution. That's the solution no matter what the "official" diagnosis is, right? We just all have this need to have official confirmation, I guess. Certainly, confirmation is a motivator to seriously do the diet and never "cheat", I suppose. And confirmation stops the search...in case it might be something else.

I just read the book "Dangerous Grains" and I really recommend it for EVERYONE. It will definitely make you want to eliminate gluten and the grains associated with it. Very enlightening and shocking book, actually.

[Claire]

The big question seems to be whether or not some sort of vague gluten sensitivity, which one can obviously live with fairly successfully, can later turn into serious celiac disease which then must be figured out.

I am of the mind that some underlying condition does not 'turns into' celiac. I think celiac was there all along and presenting with only the mildest of symptoms. Then, with a trigger, it erupts into a full blown expression of the the disease - not something new, just a more pronounced version of the same thing. Claire

[darkangel]

I guess the problem now is that I'm still not feeling 100% ...

Try eliminating the dairy protein casein and see if that doesn't help. Many who are gluten intolerant are casein intolerant, too. It made a huge difference for me. I suspect once I eliminated the gluten, the casein problems became even more pronounced.

[jojoe72]

I'm going through the same thing right now. Through EnteroLabs my results were positive for the gene, positive for the antibodies and positive for casein sensitivity. To verify, I went to my doc last week and got the blood panel done. The results were negative. I told the doc I'd been gluten free for almost 5 months with only a slip up here and there but he said it didn't matter. What I can't figure out is when I did screw up I felt terrible about 2 days later and after a week I finally felt 100% again. From reading on this board, that seems to be the way it goes with most of you. Even the smallest bit of gluten (like getting Communion) now gives me palpitations and a headache. I though it might be psychosomatic but I wasn't expecting it. I think I might try going back on gluten starting in January and then have the blood tests redone in March. I just don't want to risk having a horrible holiday season. I know most of you may say "Why bother?" but for me I need to have a positive so I know I'm not going nuts. Up until about 5 months ago I had no idea what Celiac was but after reading Dangerous Grains and the posts on this board I'm almost 100% positive it's what is at the root of my problems. Frustrating to say the least.

Joe