Lisa

Those of us with Hashimoto's CLEARLY have an autoimmune disease! And for those of us whose Hashimoto's either disappears or improves greatly on a gluten-free diet and gets worse on a gluten challenge--well, that makes it pretty clear that it's gluten-induced.

Hashimoto's is diagnosed by blood work, measuring anti-thyroid antibodies. It is not diagnosed by low TSH alone. It's a good example of your immune system attacking YOU.

Same for Graves' disease, RA, lupus, rosacea, pre-diabetes and diabetes, and all the other autoimmune diseases that clear up on a gluten-free diet. We know through blood work what our "other" (other than celiac) autoimmune diseases are, and we know through blood work (as well as from symptoms) when they improve or clear up on a gluten-free diet, and when they return upon a gluten challenge..

Pardon me. I presumed that we were talking about Celiac Disease and Gluten Sensitivity. I confined my post to address those issues. I did not notice your word "disease(s)" as plural.

I am not knowledgeable about testing other autoimmune diseases.

Hi Lisa,

Forgive me for butting in here, but I always thought that celiac disease was a progressive disease; at least, the damage from untreated celiac disease will become worse and worse over time, isn't that so? Doesn't that fit the definition of progressive disease? Or am I missing something here?

At the age of two, my granddaughter Carly wasn't growing well (she was below the first percentile on the growth charts), and then she began to lose weight. She had diarrhea and stomach problems. They suspected celiac but her blood work and initial biopsy were both negative.

A year later, Carly was starting to look like those children in Ethiopia, her ribs and collarbone plainly visible, with the protruding stomach of starvation, even though the poor little thing was eating like a horse! Her gastroenterologist decided to repeat the biopsy.....and lo and behold, damaged villi! My daughter Robin started Carly and her entire family on the gluten free diet immediately. Robin has Hashimoto's thyroiditis and may well have celiac disease herself, but we'll never know, because she's gluten free and will never go back to eating gluten.

Of course, now that she's gluten free, Carly is healing well; she's gaining weight and is getting close to normal range in both height and weight on the growth charts.

But if they had put her on the gluten free diet back when her blood work and biopsy were both negative, she might have been diagnosed as being gluten intolerant....after all, she didn't fit the celiac disease profile at that point in time!

Therefore it seems to me that it's entirely possible that someone could be diagnosed as NCGI in the early stages of celiac disease, right? Because there would be no way to distinguish between gluten intolerance and early celiac disease. As to "sudden onset" of symptoms, isn't it possible that the disease could have been lurking silently and asymptomatically for years before the damage was severe enough for the symptoms to finally make their dramatic appearance?

Perhaps (just perhaps), there is no such thing as "gluten intolerance"....it's merely an early phase of celiac disease. I'm just thinking out loud here, but it seems as though I'm not the only one who has speculated along those lines.

Take care,

JoAnn

JoAnn,

Certainly Celiac can progress if unchecked or undiagnosed, without a doubt.

Diagnosing Celiac Disease if far accurate, especially among children. I have also said that I believe the diagnostic envelope if far too narrow. Research need to step up here!

In a perfect world, when all testing is l00% accurate, there has to be a jump/trigger when gluten sensitivity become autoimmune. What caused that jump, I don't know. But when it does, it becomes Celiac Disease.

Just my thoughts...

This seems contradictory to me. Perhaps it's semantics, but I can't understand in what respect the reaction is "the same" but in one case it's autoimmune and in another it's not. If one reaction is autoimmune and one is not, I would not call them "the same." Nor am I persuaded that the autoimmune system always or only attacks the villi in the intestine. I may just be a little out of my depth, here, but I'm not seeing the evidence that one reaction is autoimmune and the other is not.

Try substituting "reaction" with "symptoms" and see if it makes sense.

because they are not biopsy-diagnosed as celiac, yet they have autoimmune diseases directly caused by gluten ingestion

If not through biopsy or blood work, how would you know that you have an autoimmune disease?

There may be spectrum for gluten sensitivity/intolerance and there may be a spectrum for Celiac Disease, but I believe the two are separate, sharing symtoms and controlled gluten removal.

Once again, this is a "cows come home" topic. Perhaps research down the road may provide us with the answers.

Forgive me if I'm missing something obvious, but you seem to suggest that gluten sensitivity is not an autoimmune response - only celiac is. Are you saying that an autoimmune response always results in villi damage, and is thus diagnosable by the "gold standard" biopsy? I have always understood gluten sensitivity to be an autoimmune response - just one that does not necessarily attack the villi primarily.

But I'm perfectly ready to admit that I am far from an expert in this area.

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In general terms, an autoimmune response is when your body attacks itself.

An autoimmune response in your small intestines, causing your body to attack itself, is triggered by the protein found in gluten is considered Celiac. It is one of the few autoimmune diseases that can be corrected by removal of gluten from the diet.

A gluten sensitivity, may create the same reaction to gluten, but does not initiate the autoimmune response. A gluten sensitivity can also be corrected by removal of gluten from the diet.

A gluten allergy, gluten sensitivity/intollerance and Celiac Disease are different, (ducking my head) according to my understanding.

I think the problem lies in attempting to diagnose CELIAC so narrowly,

I agree that the diagnostic envelope for Celiac Disease is too narrow.

Granted, everyone is different. But when does a gluten sensitivity become an autoimmune response?

Or do the people who are gluten sensitive require a trigger into Celiac Disease?

For example, I was never gluten sensitive. I didn't even know what gluten was until I was diagnosed, when one day, after a period of high stress, my symptoms kicked in.

I assume that I was predisposed, but never sensitive to any foods. Am I misdiagnosed? Where is this spectrum? I'm not trying to be argumentative, I just don't fit the theory.

Again, I acknowledge that there is no standard with regard to Celiac, similarities, but no standard.

. As said there are many of us here who recognize that celaic and NCGS are often different stages of the same disease.

This theory, implies that gluten sensitivity to Celiac is a progressive disease. Maybe so. But how do you explain sudden onset (triggered) of Celiac Symtoms (autoimune response)?

Hi Dylan. Nice to meet you, "officially" I mean.

You know there are many people here who have had life struggles and still struggle today. Celiac may not be the answer to everything, but you may be on to something. It might be worth the try.

When I get glutened, I give my family a warning, as I feel myself getting very up-tight like an over wound clock. They scatter like ants.

I know a few people here who have struggled with mental illness for many years and now feel symptom free due to a complete gluten free diet. It took several years, but they now can live a "normal" lifestyle.

Your history has been a rough road. I hope you find comfort here. We have lots of good people here, willing to offer their experience. Glad to have you.

Kraft is a company who will clearly list ALL forms of gluten.

My personal favorite is Sweet Baby Ray's BBQ Sauce - just love it.

I Live near Bangor Maine. Does anyone know of a specialist in my area??? Or in Maine at all????

Thanks, Amber

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Amber, give this contact a try. Perhaps they can direct you.

Can someone suggest a physician. Doesn't seem like the one that I go to knows anything about Celiac. I live in the Chicago area by the way.

To shayFL, you mention that you had a complete celiac panel through directlabs. What is a complete celiac panel? Like what tests does it include?

Where else can I get a complete celiac panel?

This is the Serological Panel to request from a doctor. Any GP can order these tests.

Antigliadin antibodies (AGA) both IrA and IgG

Antiendomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Linda,

Welcome to the Club!

I am so glad you found the right path toward recovery. The theme around here and nationwide is "Celiacs Helping Celiacs", so pay it forward and reach out to others. Your family looks like a great place to start.

You have exciting days ahead, full of recovery and good health. I'd be willing to bet you will be seeing improvement in your other issues and your diagnosis of Lupus may be reversed.

Best of health to you and looking forward to seeing you here!

Janet thanks for posting this.

I'm always glad to see articles about Celiac Disease in main stream publications, but I honestly don't know what to think about this one.

Listing the symptoms as bloating and canker sores is offensive to the people who suffer for countless years with debilitating symptoms.

Why should Celiac be considered a "yuppie disease", solely because it's generating a billion dollar specialty food business. Could it be that US research is attempting to catch up with their European counterparts. Diagnostic abilities have become more refined. And, advocacy has reached new levels.

My concern is when the "yuppy" trend subsides, will there still be a billion dollar specialty food business? When the attention shifts to something else, will people still be diagnosed? Will public awareness fall off?

Don't know. I've seen great inroads in the past three and a half years. I do hope the trend continues, whatever they call it.

i have been diagnosed with celiac and dh. i am currently eating bread. and taking what supplements i can to make both the dh and gut aches, both better and worst. in trying to find a cure. hyaluronic acid was tryed because its a main componet in synovial fluid. where most of my out breaks take place.[in the joint areas] i took the acid at every meal. my dh itched at an increasing rate for 5 days. untill i stoped taking it. please let me know if any one has any usefull informaition involving looking for a real cure. i would like to try it out. please no blogs about gluten-free diets keep this moving in a forward direction.

Ninety percent of the members here are on the gluten free diet for themselves or their family members.

There is a lot of great information here. Take a walk around.

Have your tried the gluten free diet? Perhaps that may be your cure.

Does anyone know if Little Smokies are gluten free?

Hillshire Farms Little Smokies are gluten free.

Because Barley Malt is not one of the 8 top allergens which are required by law to be listed. Barley, malt or rye can hide in "hidden ingredients".

Here is a list of companies who DO: (we like to support them)

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I hope that Dan finds comfort through the love and support of those around him. And strength for those who hold him up.

We are close to an elderly lady, who lost her two sons tragically. We have seen her pain.

Thank you for HER candle, richard. And, as Patti said so beautifully, a peaceful and joyous holiday to you and your family.

anybody have a handy list for Mr. Moore - wasn't there a list somewhere about "50 things you can eat right now" that are gluten-free? I can't find it........

This is a great site:

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:lol:

But I'm guessing that you made her smile for four hours straight. Being charming is never a bad move.

Oh yes!

"k thanks! btw your pretty cute!"

Settle down now, those are the poster's daughters.

richard

I was gonna say that I look pretty darn good for 54, richard!

Susie, I hope this is legible enough to use. You may be able to find a better translation for Japanese Dining Cards.

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It might say "serve me yeti tartar" for all I know.

Many people here react to Frito/Lays Products, even though they are gluten free,. The cross contaimination during manufacturing seems to cause a problem for some.