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[mommyetb]

WE have been consulting with a new GI. He did some tests regarding Tim's genetics. Today he called and said that Tim has neither gene for celiac. It is virtually impossible for him to have it! We have thought since March that celiac was the problem. Turns out it is a sever wheat allergy that shows up outside of the regular IG testing for allergies. So instead of a lifelong disease, that can lead to so many other problems...he has an allergy that can get better, outgrow or at the very least not lead to other issues later in life. My only warning to parents is BEWARE of interolab! Tim tested absolute positive for celiac. Our GI is doing some asking around of other ped GI's and it seems that this lab is either unheard of or is known to make everyone who tests with them positive for celiac. Well, for us enterolab was 100% wrong!!

So, we will be departing this board. Thanks for all the support and help you all have given to us. I hope you all do well and get better.

HUGS

Taffy and Timothy

Tim diagnosed through diet at 15 months

Diagnosed through enterolab July 2006

Undiagnosed today September 29 2006

[AndreaB]

Enterolab does have people who test negative, my husband being one even though he has two celiac genes. Myself and my daughter have one gene and my oldest son has 2. Dr. Fine is working on publishing his work and has helped many people.

Yes, your son can outgrow the allergy, doesn't mean he will. I am mildly allergic to dairy and even though I barely ate it for three years, am still allergic. Did your son come back with gluten sensitive genes from enterolab? Dr. Fine doesn't say that you have celiac, just gluten intolerance. Depending on the genes, even the non celiac ones can be quite bad. Just ask some of the dq1 people.

Wishing continued good health for you and your family.

[Guest Kathy Ann]

Did you get a genetics test from enterolab also for your son or just from the doctor? From what I understand, other genetic testing labs are not calling anything but DQ2 and DQ8, celiac genes. Enterolab has supposedly discovered from its soon-to-be-released 8 year long study that there are other gluten intolerant genes involved as well. DQ1,6 is one of them that I have.

From this message board, I have also learned that many people do the enterolab testing and come back negative for celiac or gluten intolerance. I don't think there is any fraudulence involved with enterolab. It is obvious that they would have a high number of positives because the only people who usually test with them are those who SUSPECT they do have celiac or gluten intolerance already.

I truly hope your son is not celiac. If it's true, you have great reason to rejoice. But just be sure to have all the latest research information before you make a decision to add gluten back into his diet. I have great admiration for the medical profession. But many of them aren't quite up to speed on this particular disease.

Maybe some of you celiac veterans can help me out. Do I have this correct?

[CantEvenEatRice]

I wish you would stay on the board to keep us updated how your son does going back on gluten. Obviously, you will stay away from wheat, but I will be curious about gluten. Your post is another example of what makes me curious about gluten sensitivity vs. Celiac. Maybe your son is gluten intolerant, but not Celiac. I am still trying to understand the difference. All I know is that so many people test negative and are told there is no way they have Celiac, but then they get so much better on the diet. There has to be more to all of this than just the 2 Celiac genes. Best of luck to you!

[Guest nini]

I'm gonna keep my mouth shut on this one...

[CantEvenEatRice]

I would highly recommend checking out the website

www.glutensensitivity.net

I just found it and it talks a lot about "Gluten Sensitivity" in addition to Celiac Disease.

If your son responds fine to going back on gluten, then you have your answer. But if he contines to react to barley, oats, etc., then you may want to consider the gluten sensitivity.

[eKatherine]

Turns out it is a sever wheat allergy that shows up outside of the regular IG testing for allergies.

Tim diagnosed through diet at 15 months

Diagnosed through enterolab July 2006

Undiagnosed today September 29 2006

Just curious how the doctor diagnosed a severe wheat allergy that didn't show up in allergy testing, and was giving celiac symptoms, which are different from allergy symptoms?

[mommida]

I would like to know the age of the son at the time of testing? What labs did the testing?

If the child is able to tolerate spelt?

Are there any follow up tests scheduled? A one year follow up endo w/ biopsy?

I hope Taffy will give updates and I wish Tim and the family the best of health. I think the board can still be informative for wheat free food choices.

L.

[Guhlia]

Enterolab doesn't necessarily diagnose Celiac Disease. It diagnoses gluten intolerance (which can manifest itself as Celiac disease or as just an intolerance). It is entirely possible to test positive through Enterolab and not actually have Celiac Disease OR any of the Celiac Disease genes. Please, please look into this further before reintroducing gluten into your son's diet. Little ones are far too precious to take any uneccessary risks.

[Fiddle-Faddle]

If your child had such a positive response to the diet, that means more than any test, lab or doctor. As far as the genetic part of it, celiac is nearly unheard of in Asian countries--but it is rising very quickly in Asian-Americans who have been consuming the typical Western diet. That certainly gives me pause in ruling out something like celiac based on genetics. That's like saying that someone who does not have BrCA genes can't get breast cancer, and we already know that's not true.

It's certainly possible that your doctor is correct. But something doesn't seem quite right to me. My gut says he's wrong--but it's what your gut says that counts.

[Carriefaith]

I'm glad that your son does not have celiac disease Gluten intolerance is still a possibility though.

I recommend being very careful with his severe wheat allergy though, and you may want to ask his doctor about carrying an epipen if his reactions are really bad.

[mommida]

My family went through genetic testing through Prometheus Labs. (Which is HIGHLY respected in the medical community.)

Daughter was positive for both DQ2 and DQ8, she was VERY sensitive to gluten, improved on gluten free diet.

My test was negative for (only those two specific genes that were screened for), Very sensitive to gluten (same way as my daughter minus the vomiting) improved on the gluten free diet.

My son was negative, had unexpained constipation, migraine headaches and rash, amongst other vague symptoms, improved on a gluten free diet.

My daughter's blood was drawn on a different day than my son's and my test.

Prometheus explained that they know there is 2% of Celiacs that their test will not detect as a positive, and EVERY blood test has a 30% error rate.

If I had allowed my daughter to have the endoscopy with biopsy to have "the gold standard" diagnoses, we would have been used for a study to identify other unknown Celiac genes. (Since she was hospitalized for dehydration trying to maintain the gluten diet for testing, I determined it far too dangerous for to continue further testing.)

I really wish this family the best. I know we probably seem like major skeptics, but a lot of the personal stories here have a common theme of misdiagnoses.

L.

[Ursa Major]

Taffy, I am afraid you're making a huge mistake, and your doctor is just as ignorant as most doctors on gluten intolerance. If your son was diagnosed by Enterolab, I am sure they were right. I also know that they NEVER claim anybody has celiac disease, but rather, gluten intolerance. If Timothy has the gluten sensitivity genes (which NO other labs appear to test for), then of course, your doctor would claim he doesn't have the genes. By the way, researchers are admitting that SO FAR they have only found two celiac disease genes, but believe there likely are more. So, even if Timothy doesn't have those two genes, does NOT mean that he can't have celiac disease or gluten intolerance.

Also, I have heard from many people who have tested negative with Enterolab. CarlaB had herself and two daughters tested, and one of her daughters came back negative. And she isn't the only one.

I completely understand that you really don't want Timothy to have celiac disease (or gluten intolerance, same treatment). What mother would want her child to have a lifelong intolerance to a food component that is in everything and so hard to avoid, never mind being part of all the 'fun' foods kids love? But for his sake, I really hope you're not going to make him really ill by listening to the doctor. Because personally, I don't think what he says makes a lot of sense.

And of course, a lot of doctors would like to make Enterolab look bad, they're taking business and patients away from them, and use a testing method they don't understand. And I bet the pharmaceutical companies hate them, too.

I did some research, and if you follow this link and scroll down to 'Allison's story', you will find that it is definitely possible to have celiac disease without the genes your son was tested for. Open Original Shared Link

[celiacgirls]

I wanted to tell you my story about my youngest daughter. From the very first time I gave her wheat, I suspected a problem with it. When I mentioned it to the doctor, she mentioned celiac disease and said she would need to be tested by a GI. My grandmother had celiac disease so I was very concerned my daughter would have it. I took her to be tested when she was 1 year old and was told she didn't have it. When I stopped giving her gluten, her symptoms improved. Because she supposedly didn't have it, I would re-introduce gluten every now and then. At some point, she stopped reacting. Her symptoms at the start were very mild and many people (like my husband) would not have thought there was any problem.

When she could talk, she started complaining about her tummy hurting. Again, I had to wonder about celiac. She was tested again and all tests were negative. I was told she probably had an anxious tummy. At one point, they discovered reflux and she started taking medicine. That did help. She stopped complaining on the diet but being told she was just anxious and that she didn't have it, we didn't always stick to the diet. I let myself be convinced it was a placebo effect.

All of this went on until she was about 8. She was on and off the gluten-free diet during this time. Her symptoms were never as bad as what you hear about here, but she did complain about her tummy hurting a lot. She was mostly willing to be gluten-free but would give in to some treats. I should add she passed up a lot of cookies and cakes so that should have told me something. My mother, who had a negative biopsy, told me that she felt better eating gluten-free, so I should take my daughter seriously. She was tested at least 3 times by 2 different pedi GI's and it was negative for celiac. At 8, I read about Enterolab here and had her tested. She did test positive for gluten intolerance. She has been on the strict diet since then and rarely complains about her tummy.

Because of her positive result, I tested myself and my other daughter and we are positive, too. We are strictly on the diet and feel much better. I have done the gene test from Enterolab and have one gluten intolerant gene and one celiac gene. I haven't done my kids gene tests yet. My other daughter and I, who never suspected gluten was a problem for us, now do get sick if we accidently have some.

I believe Enterolab has a high positive rate partly because people who are tested there suspect a problem and partly because they are more willing to call it a gluten problem. Even now, my daughter's GI thinks she doesn't need to avoid gluten. Enterolab does identify one more gene as a gluten intolerant gene than the other labs. I believe his tests show that 30% of the random population is gluten intolerant. It's possible Dr. Fine is way off but it is also possible he is seeing something the rest of the medical profession is unwilling to acknowledge. In our case, he was right and if it is later shown that he is just a quack trying to scam people, it will not matter to me. We will stay gluten free because it has made a huge difference to us.

My point to all of this is to follow what you believe. If when you re-introduce gluten, there doesn't seem to be a problem, then go with it and keep it in mind if your child later has problems. If you start giving gluten and the problems come back, I would go with what you have believed and what Enterolab has said. Too many of us here have had doctors tell us it wasn't gluten that was the problem when we now know that it was for us to fully accept what your doctor said.

[Izak's Mom]

Today he called and said that Tim has neither gene for celiac.

Just my 2 cents here - I think there are more than 2 genes for gluten sensitivity - maybe not full blown celiac, but gluten intolerance/sensitivity:

Research Supporting Non-Celiac Gluten Sensitive Genes

[lonewolf]

I agree with the others who have defended Enterolab. My son tested negative and doesn't have either of the main celiac genes, although he has a double copy of the gluten sensitivity gene.

I was told that I was "allergic to wheat" over 10 years ago and that I would be able to eventually re-introduce it if I avoided it for long enough. It didn't happen that way. I don't have the Celiac genes either, but I am gluten intolerant and much healthier by staying gluten-free.

Please keep an open mind that maybe your doctors are the ones who are mistaken - not Enterolab.

[Mamato2boys]

I agree with the others who have defended Enterolab. My son tested negative and doesn't have either of the main celiac genes, although he has a double copy of the gluten sensitivity gene.

I was told that I was "allergic to wheat" over 10 years ago and that I would be able to eventually re-introduce it if I avoided it for long enough. It didn't happen that way. I don't have the Celiac genes either, but I am gluten intolerant and much healthier by staying gluten-free.

Please keep an open mind that maybe your doctors are the ones who are mistaken - not Enterolab.

My son also has a double copy of the gluten sensitive gene, and no celiac genes. DH and I had no idea we were sensitive to gluten, but it explains a lot.

[shayesmom]

Just my 2 cents here - I think there are more than 2 genes for gluten sensitivity - maybe not full blown celiac, but gluten intolerance/sensitivity:

Research Supporting Non-Celiac Gluten Sensitive Genes

⦣8364;?DQ1,3 found more commonly in MC and RA

⦣8364;“DQ3 subtypes are: DQ7, DQ8, DQ9 ⦣8364;?DQ1 found more commonly in gluten ataxia

⦣8364;?DQ9 binds and reacts to gluten in vitro

⦣8364;?Only DQ4 seems not to increase risk of GS ⦣8364;“Rare in U.S. - 13% heterozygous, 0.4% homo.

In many other countries, there are other genes that are being identified with Celiac and gluten sensitivity which aren't all yet recognized in the U.S.. For example, here's the list in New Zealand (source:Open Original Shared Link):

Gene: Associated with:

HLA-B8 Celiac disease

HLA-DQ1 Gluten sensitivity

HLA-DQ2 Celiac disease

HLA-DQ3 Gluten sensitivity

HLA-DQ5 Gluten sensitivity

HLA-DQ6 Gluten sensitivity

HLA-DQ7 Celiac disease

HLA-DQ8 Celiac disease

HLA-DR3 Celiac disease

Considering that it takes an average of 9-11 YEARS in this country to obtain a formal diagnosis.....I definitely would err on the side of caution in this. I hate being negative, but unfortunately I've seen this problem manifest in some pretty nasty ways in people that I know.

To the original poster....you have my best wishes and I truly hope that all will be well with this last opinion you have chosen to follow.

In the meantime, I'm hoping that our medical system catches up with the rest of the world on Celiac Disease so that more people can be diagnosed properly and quickly. Maybe then patients won't have to bounce back and forth between being diagnosed, undiagnosed and then rediagnosed. I hear that in Italy, it only takes 3 1/2 weeks on average to diagnose a celiac. Wouldn't that be too cool?

[eKatherine]

To the original poster....you have my best wishes and I truly hope that all will be well with this last opinion you have chosen to follow.

In the meantime, I'm hoping that our medical system catches up with the rest of the world on Celiac Disease so that more people can be diagnosed properly and quickly. Maybe then patients won't have to bounce back and forth between being diagnosed, undiagnosed and then rediagnosed. I hear that in Italy, it only takes 3 1/2 weeks on average to diagnose a celiac. Wouldn't that be too cool?

Not only in this country is it very hard to get a diagnosis of celiac or gluten intolerance when a person truly has one or the other, but even without looking very hard it is really easy to find a second opinion that will tell you that regardless of what the tests show (even a biopsy!), you don't have it and/or it's ok to eat all the gluten you want. I always figure when somebody says "My doctor diagnosed me, but it's always a good idea to get a second opinion" that 1.) they've got insurance that will cover the costs of all the unnecessary testing they want done; and 2.) they're looking for somebody to tell them that they don't have it and should go ahead and eat whatever they want, at which time the search for more opinions will end.

[shayesmom]

Not only in this country is it very hard to get a diagnosis of celiac or gluten intolerance when a person truly has one or the other, but even without looking very hard it is really easy to find a second opinion that will tell you that regardless of what the tests show (even a biopsy!), you don't have it and/or it's ok to eat all the gluten you want. I always figure when somebody says "My doctor diagnosed me, but it's always a good idea to get a second opinion" that 1.) they've got insurance that will cover the costs of all the unnecessary testing they want done; and 2.) they're looking for somebody to tell them that they don't have it and should go ahead and eat whatever they want, at which time the search for more opinions will end.

Yes. I know. And that is exactly what disturbs me the most about this post. I've run into doctors who will tell a patient what they want to hear despite positive dietary response. And there's also the factor that most doctors will volunteer that "the gluten free diet sucks" and will actually work quite hard to keep patients from doing the diet due to their own misconception of it.

But I do understand the desire in not wanting this to be Celiac. Don't we all. And for some, non-Celiac gluten enteropathy is somehow associated with being somehow "less serious" of an issue. It is so easy to get conflicting information on this. And it's even easier to sit back and depend on the medical professionals to hash it all out. Meanwhile....they can be as confused, if not moreso than the rest of us. If it's not controlled by a med, they aren't trained in it. I had one tell me, "Don't talk to me about food intolerance! I don't know about that. But if it's a disease, I can find you a drug that will help". I've also been told that dd could "outgrow" this. Eh. Not holding my breath, nor do I care to push the issue. The diet is working and we're finally "okay" with it...on all fronts. It was hard to get to the emotional point of just "letting go" of gluten....but quite liberating in the end.

[tarnalberry]

While I think that we're often a little to prompt to say "oh, it must be celiac", there are a few red flags here.

First, is the identification of the gluten sensitivity genes by the Enterolab test. Those weren't tested for by a regular, 'mainstream' lab. (Oh, I can't wait until Fine gets his work peer-reviewed and accepted!)

Second, and more importantly, is the results of eliminating gluten from her diet.

Third, is the reliance on the exclusion of celiac disease based on only testing for two genes, when it is known that this does NOT cover all cases. (This relates to number one, so maybe it's really one and a half? )

I'm not one to say "oh, he probably still has it", but I am one to say "oh, the doctor's just ignoring the rest of the evidence and the fact that not all the genes are known? that's bad medicine."

If I were in this situation, and having inconclusive (nearly negative) test results I was close to it, I would encourage caution. I'm sure you'll reintroduce non-wheat gluten, and I can understand why. But I would encourage you to be alert and aware of how your son responds. Don't dismiss symptoms as "random tummy trouble" if they are persistent. Obviously one instance of gas, or an upset stomach, doesn't mean it really is gluten, but be somewhat scientific about keeping track of what he gets for food and how he responds.

What matters most is how he feels, at this point.

Good luck, and I hope it's 'just' a wheat allergy.

[floridanative]

I had a doctor actually tell me he was hesitant to put me on the gluten free diet since my worst symptom was anemia. This was AFTER my positive blood tests and biopsy for Celiac. Unfortunately it seems that some doctors are very hesitant to diagnose Celiac, and even if they do, you still have knuckleheads out there like my ex-doc hesitant to prescribe the gluten free diet. Obvioulsy I went gluten free the moment I hung up the phone after asking the jerk if I continuted to eat gluten, wouldn't I eventually get worse symptoms. He said probably so maybe it was best to go gluten free.......ya think???? Duh!

[VegasCeliacBuckeye]

FYI,

There are many doctors who now believe that people can have Celiac Disease or Non-Celiac Gluten Sesnitivity. The latter can be diagnosed without the Celiac genes.

Just throwing it out there...

[Fiddle-Faddle]

FYI,

There are many doctors who now believe that people can have Celiac Disease or Non-Celiac Gluten Sesnitivity. The latter can be diagnosed without the Celiac genes.

Just throwing it out there...

Where? WHERE? How do you find them?????????????

[Izak's Mom]

Where? WHERE? How do you find them?????????????

We're still waiting on blood test results for my son, but I'm going to go out on a limb and say - pretty confidently- that my son's ped. is one of those docs. I think what it boils down to is a willingness to accept 'unpopular' science, or at the very least, have an open mind to the fact that there are a zillion things in life that you just can't understand, or easily understand. My son's doc is the kind of person who has always told me to 'do what feels right for you and your son' - I can remember being in there after getting a horrific case of thrush at 6 weeks postpartum, trying to reconcile the reality of incredibly painful breastfeeding on top of all my hormones and the complete craziness that a first baby brings, and tentatively suggesting that maybe I could give him some formula in addition to breastfeeding - and she was this amazing pillar of support, telling me to do what worked best for BOTH of us, and not to get myself worked up about it. Same thing when I approached her about his chronic D and suggested maybe I should take him off dairy? And she wholeheartedly supported my investigation and actually SHE was the one who suggested a wheat allergy, which I took one step further by removing gluten from his diet - and presto, we had our answer. Was the answer on paper? Did it some from a lab? No. The answer was, we decided to try something to address an issue - in this case, removing gluten to stop the D - and it worked. We decided to have the blood tests after the fact - I do admit to being kinda curious about the whole genetic thing - but my point is, regardless of what the results are, I know that the diet works and that's enough for me - and my doc. And my main point is that there are doctors who are open-minded, and listen to you, and take your real-life day-to-day experiences as a parent and a mother as seriously as any lab diagnostics. How to find them? I'd start by word-of-mouth...ask people you know for opinions, ask the nurses at the clinic/hospital, heck, interview the docs themselves! Any doc worth his or her salt should be happy to meet with a new patient for a 'get to know you' chat, so you can get an impression of what they're like as a person and a doctor. It's a bit of extra effort, but it's so worth it to find a medical professional whose opinion you respect, and more importantly, who respects your opinion just as much.