For Everyone Who Is A "self-diagnosed" Celiac...

[lynnhopes]

If lay people and the medical community really understood the difference between gluten intolerance and celiac disease I would tell them I am gluten intolerant. However, people think intolerance means you can have the item now and again. When I say celiac on the other hand, people listen to me and respect my dietary needs.

My bloods never showed an issue. I later found out that since I was eating a very low carb diet, they were not accurate. So, I had the enterolab tests done and I have one celiac gene as well as one gluten sensitive gene. I also showed mild malabsorption and elevated antibodies. As well as that I have Hashimotos thyroiditis so the chances of me having celiac are higher than the normal population.

Since I went gluten-free I have lost 8.5lbs and digestive issues have cleared up.

I could do a gluten challenge to get an "official" diagnosis but I don't want to go through that pain. I am looking forward to the day Kenneth Fine's work is validated and I can be officially diagnosed by that.

[CarolO]

I recently underwent every test for celiac disease and all test came back negative. The doctor has dx. me with gluten intolerence. I told the doctor that being dx. with "celiac disease" did not make a difference. I know now after going gluten free that that has been my problem all along. Whether I am dx. with celiac disease or gluten intolerance to me is basically the same treatment----- NO GLUTEN for me. Also after going gluten free I have also become lactose intorante. But will try and re-introduce lactose in a few months, but slowly.

Also, I have epilepsy for the last 22 years and at first going gluten free my seizure activity was MUCH less, but now after about 4 months being gluten free the seizures are back.

...I'm just wondering, after reading Dr. Stephen Wangen's book Healthier Without Wheat, how you all arrived at the diagnosis of celiac. Celiac disease is a very specific subset of a larger intolerance known as Gluten Intolerance. Celiac is only diagnosed when you have villous atrophy; however many more millions of people have Non-celiac Gluten Intolerance which can produce symptoms that feel just as debilitating as celiac. In other words, being gluten-intolerant is completely possible without having celiac disease. I'm not trying to split hairs, just wondering how you all arrived so definitively at your diagnosis of celiac. Only 1% of the population has celiac disease while an estimated 20-30% have non-celiac gluten intolerance.

By the way, the reason many of the bloodtests come back with false negatives is because you have to have total villous atrophy (or something darn close to that!) before the antibodies can escape into the bloodstream (which further bolsters Wangen's claim that many people have non-celiac gluten intolerance rather than celiac disease and that's why it is so often missed in labwork). It doesn't mean your symptoms are any less real or devastating; just means that you don't have celiac disease (villous atrophy) per se.

I'm not sure why any of this matters; I'm just wondering if we do ourselves a misservice by "self-diagnosing" celiac rather than accepting the more widespread diagnosis of gluten intolerance. I don't think the diagnosis of non-celiac gluten intolerance is any less "legitimate" than celiac disease, so I'm not sure why so many seem to be searching for that label. Clearly doctors need to be better educated about the serious side-effects gluten can cause, whether celiac or non-celiac gluten intolerant. Just because you may not have celiac doesn't mean the doctor should dismiss you or discount your symptoms. I highly recommend Healthier Without Wheat for anyone who is interested in an in-depth analysis of this.

Just thinking outloud....

[Mskedi]

So far I've only called myself "gluten intolerant" because I clearly am. That said, I suspect Celiac because it runs in my family.

[RiceGuy]

I do not know which I am, celiac or gluten-intolerant, and it really makes not one whit of difference to me.

My short-form history is that I first became lactose intolerant...[snip]

As I understand it, lactose intolerance occurs in Celiac because the antibodies begin to destroy the villi. And apparently, it is the tips of the villi which are responsible for producing the lactase enzyme, to digest lactose.

It is for this reason, that I suspect many people who think they are "only" lactose intolerant, actually have Celiac. Or at the very least, are gluten intolerant. But again, if the villi are being damaged, that suggests Celiac to me.

The question is not whether or not the antibodies are produced, but whether or not they can be detected in the blood stream. They certainly are produced and lead to the atrophy, *but* one theory is that there is not enough damage, enough intestinal permeability, for the antibodies to make it through the usually tight intestinal wall to the blood stream until there is significant damage. I certainly don't have an answer.

Perhaps I'm incorrect, but I have always believed that the antibodies are released into the bloodstream, and from there, they reach the intestines. I don't believe they are produced in the intestines, just that the small intestine is the area where the damage is known to occur (although from the range of symptoms people report, I think there is clearly damage going on in other areas of the body).

Doing a bit of searching, I located Open Original Shared Link. It is quite fascinating and informative.

[RiceGuy]

Also, I have epilepsy for the last 22 years and at first going gluten free my seizure activity was MUCH less, but now after about 4 months being gluten free the seizures are back.

It is a very curious thing - how so many find certain symptoms intensify after going gluten-free. I have found, that the symptoms that got worse for me, were due to nutrient deficiencies. Even though my diet is nutrient-rich, it seems those nutrients just don't get absorbed as well as they should. One would think that absorption would be improved since going gluten-free, and thus how could symptoms worsen, or new ones appear? I don't know, but I have found that taking certain supplements to be absolutely vital.

This is just a guess based on the research I've done, but my first thought for epilepsy, would be to take minerals including magnesium, zinc, potassium, manganese, calcium, etc, and vitamins including methylcobalamin (a type of B12), co-enzyme B-complex, vitamins A, C, and E, and vitamin D3. Some other things which may help are Omega-3s, Biotin, L-Tyrosine, Acetyl-L-Carnitine, Vinpocetine, Co-enzyme Q-10, Taurine, Phosphatidylserine, Phosphatidylcholine, Inositol Hexanicotinate, Pyridoxine HCL, Gotu Kola, and Ginkgo Biloba.

Avoid those cheap multivitamins at the drug store. They're mostly useless. You want highly bio-available, high potency supplements. Here's an article about magnesium which you may find interesting: Open Original Shared Link

[mushroom]

As I understand it, lactose intolerance occurs in Celiac because the antibodies begin to destroy the villi. And apparently, it is the tips of the villi which are responsible for producing the lactase enzyme, to digest lactose.

It is for this reason, that I suspect many people who think they are "only" lactose intolerant, actually have Celiac. Or at the very least, are gluten intolerant. But again, if the villi are being damaged, that suggests Celiac to me.

That is the way I understand it too, which is why I consider myself to be an undiagnosed celiac, and will generally describe myself that way as a more convenient way of explaining my intolerance to gluten. However, I do not wish to get into an argument on the forum about whether or not I have it, so I equivocate

Very interesting link.

[darlindeb25]

I'm not sure why any of this matters; I'm just wondering if we do ourselves a misservice by "self-diagnosing" celiac rather than accepting the more widespread diagnosis of gluten intolerance. I don't think the diagnosis of non-celiac gluten intolerance is any less "legitimate" than celiac disease, so I'm not sure why so many seem to be searching for that label. Clearly doctors need to be better educated about the serious side-effects gluten can cause, whether celiac or non-celiac gluten intolerant. Just because you may not have celiac doesn't mean the doctor should dismiss you or discount your symptoms. I highly recommend Healthier Without Wheat for anyone who is interested in an in-depth analysis of this.

I agree Glutenmommy, your thoughts are very clear, and meaningful. Thank you.

It is a great book, isn't it?

By the way, I took the advice of Dr. Wangen, and started taking Thorn's Ferrasorb to raise my ferritin level. I took the bottle with me to my PCP Friday, and he said it was a very good choice, that he had read about it, and felt it was good for me to be taking. Now, after my blood work comes back, we will see if it's helping!

[ang1e0251]

hi there, we are the same age and I am curious. Your reply indicates that your presenting symptom was the rash? That mirrors my experience. I have been dealing with a rsah/dermatitis since Oct 08. i have not sought treatment for it - it's been a bad year financially for us - and I would never have connected it to celiac or GI, if it weren't for my daughter's symptoms and past history.... in the last month I "connected the dots".

We are now doing our best to stay gluten free, and my rash has started to heal. I have had no pronounced gastrointestinal symptom, but the rash is getting better and better as I continue to eliminate gluten. Did you ever seek specific dx, or just dealt with it on your own? Pm me if you want.

Sorry, I didn't mean to imply that the rash was my only symptom. I had many, many others but I justified those in one way or another, you know, I'm getting older so I must have arthritis; I had my gallbladder out so I can't have normal BM's now, etc.

It was just that I'm not prone to rashes and this was very painful as well as the itch and it was getting to the intolerable point. When I read that the rash could be related to celiac disease and relieved by the gluten-free diet, a huge weight lifted off my shoulders. I knew I could not afford a dr but I certainly could change my diet. When all the other problems cleared up, I was estatic. I didn't realize how sick I really was till I felt better. The rash healed slowly but every day it was better. If I'm badly glutened, it pops up again.

I didn't seek an official dx. It was months before my DH finally found a much lower paying job and more months before we had insurance again. When I had to see the dr for my BP, I told him my story and he really doubted me because I'm overweight. I told him I had no intention of doing a challenge so that's how it stands. I know how I feel and that's better than I've felt in about 15-20 years. There's no going back for me!

[VioletBlue]

For starters I'll try to be polite but I make no guarantees.

The doctor referenced is not an MD, he has a doctorate in naturopathic medicine from Bastyr University. So I question automatically ANY medical theories he puts forth.

TOTAL atrophy of the villi of the small intestine is not possible. You would be dead long before that happened. You have about 21 feet of small intestine. In most people it is the first of the three folds of the intestine that are damaged by Celiacs. When the villi are damaged they are incapable for absorbing the nutrients your body needs. Damage a third of it and you begin to sufer from vitamin and mineral deficiencies that by themselves if left untreated can kill you. So total atrophy isn't possible. You'd most likely be dead long before that happens.

Dr. Peter Green's book is a much better choice when it comes to understanding Celiac disease. Un like Dr. Wangen, Dr. Green doesn't have an IBS clinic he needs to support.

I was under the impression that the antibodies were attacking the villi leading to the atrophy not that the atrophy allowed the release of the antibodies. I'll admit that I don't understand a lot of the technical stuff and Wikipedia should be looked at with a little skepticism but their Open Original Shared Link seems to support my impression. Most articles I found in other sources just said the villi get damaged in response to gluten consumption without really describing the mechanism.

[darlindeb25]

For starters I'll try to be polite but I make no guarantees.

The doctor referenced is not an MD, he has a doctorate in naturopathic medicine from Bastyr University. So I question automatically ANY medical theories he puts forth.

Open Original Shared Link

Dr. Stephen Wangen is a state licensed and board certified physician. After graduating with honors with a pre-med degree from Pacific Lutheran University he received his doctoral degree in naturopathic medicine from the internationally renowned Bastyr University. He specializes in digestive disorders and food allergies and has first-hand experience with food allergies, having been diagnosed with a gluten intolerance (wheat allergy) in 1996 as well as a dairy allergy.

Due to a long history of success in treating common digestive disorders and the tremendous need for a clinic focused on the treatment of digestive disorders and irritable bowel syndrome, he founded the Irritable Bowel Syndrome Treatment Center in 2005, where he serves as the Chief Medical Officer.

In addition to the IBS Treatment Center, Dr. Wangen founded the Center for Food Allergies. His extensive clinical research into the relationship between food allergies and health has led to groundbreaking work on many conditions. He continues to investigate these issues as the Research Director of the Innate Health Foundation, a nonprofit agency dedicated to the advancement of health and health care.

Dr. Wangen also serves on the Board of Trustees for the Gluten Intolerant Group of North America, a nonprofit organization dedicated to supporting and advocating for people with gluten intolerance. His enthusiasm for quality health care is the result of a lifelong interest in human potential.

The fact that he serves on the Board of Trustees for GIG says so much to me. I edited my original post, my mistake. Secondly, it doesn't matter to me if he is an MD or not. There are many DO's out there who are not MD's either, do you trust them? Do you see the PA's in your PCP's office? I like what Dr. Wangen has to say, he makes a lot of sense. The fact that he is gluten intolerant himself makes his work even more important.

Dr. Peter Green's book is a much better choice when it comes to understanding Celiac disease. Un like Dr. Wangen, Dr. Green doesn't have an IBS clinic he needs to support.

I know Dr. Peter Green personally, and when he wrote that book, he didn't actually believe anyone needed to be gluten free unless they were diagnosed celiac. He has since changed that opinion, and now realizes the importance of gluten free for anyone with a gluten intolerance. He also recognizes the fact that a person can have gluten ataxia without villi involvement. Gluten intolerance is much bigger than they ever realized, and much, much bigger than celiac alone.

There was a live celiac disease radio segment on The People