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Member Since 01 Apr 2011
Offline Last Active Dec 17 2014 10:36 AM

#935611 Should I Keep Pursuing Celiac Diagnosis?

Posted by MitziG on 25 November 2014 - 11:27 PM

Forgot to say, hold onto your gallbladder a bit longer. Celiac can cause the gallbladder to malfunction. I had mine out after the HIDA scan said it was only functioning at 10%. However, this "attack" happened two days after a bad glutening. When they removed the gallbladder it was pink and healthy, showed mild inflammation was all. (at which point, why the heck didn't they leave it alone I wonder?!) Anyway, there may be other things that are messing with the gallbladder, and I discovered life without one just starts a road to a whole new set of problems worse than the original.
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#913588 Say You Have Celiac Without Dx

Posted by MitziG on 22 April 2014 - 10:32 PM

My two cents: If you are going to call yourselves a celiac you follow these rules:

#1 Never cheat. Not a tiny bit or bite or just this once...because if you do, someone is going to tell me that "so and so is celiac and they can do it..."

#2 Celiac is forever- gluten intolerance may get better. Are you prepared to eat this way the rest of your life? Because if you aren't, someone will tell me "So and so used to have that and thy got better/ grew out of it/ it went away/ doctor was wrong maybe yours is too..."

#3 You take the same ridiculous precautions against cross contamination that we do. Because if you let mom/friend/restaurant pick off the crutons or use the same utensils/cutting board/toaster etc....then someone will tell me that I am being ridiculous/ extreme/ hypochondriac.

I do not mind people who have a genuine serious problem with gluten calling themselves Celiac...because you probably are. We all know the problems with getting a proper dx.

However people who feel bloaty and fatty so they decide to give up gluten.
.for now...or until their skin clears up/ lose weight/ get their energy back...when THOSE people say they are celiac it really rips me. All that I want is for the people who come in contact with my or my celiac kids' food, to understand that it is deadly serious. Because for us, it is.

Celiacs don't have "willpower" or "commitment." We simply have no other choice..

If that is true for you as well, then by all means, dx yourself and be at peace with that.
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#877312 Have You Been Told It Is All In Your Head?

Posted by MitziG on 29 June 2013 - 11:05 AM

Just one thought to bring to your attention, since you are only recently gluten free and probaBly still "learning the ropes".... is it possible the foods you are reacting to are cross contaminated with gluten? Watermelon gets cut on a cutting board- did you buy a new one yet? Onion rings may be made in the same fryer as other gluteny ones, etc....probably you already know this, but just wanted to make you aware in case you weren't.

Multiple sensitivities are nott uncommon in the beginning- I think our immune system must go a bit bonkers when we take gluten away. For a lot of people things calm down a bit after a few months. It does make it difficult to know you are doing the right thing though when it seems like no matter what you eat, you end up feeling awful! Hang in there, it gets easier.
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#828992 How Much Gluten, For How Long, Must You Eat Before Testing?

Posted by MitziG on 11 October 2012 - 10:02 AM

Tom, depending on the extent of the damage, a week or two could make the difference between a positive or negative result. For instance, if the OP has only mild villous blunting, a week or two could make the villi appear normal. After all, the intestinal lining renews itself every three days. Now, if the OP has total villous atrophy, likely a week or two would make no difference. But since they have no way of knowing the extent of the damage (if any) all precautions should be taken to avoid a false negative biopsy.
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#827630 Been Called In By Doc Re Bloods

Posted by MitziG on 05 October 2012 - 07:21 AM

The blood tests are very reliable, howver, most doctors won't give you an "official" diagnosis without a biopsy. As was mentioned above, biopsies can easily miss celiac, so whether you get an "official" diagnosis or not, trust the bloodwork. False positives are almost unheard of.

That said, in the UK you may be eligible for subsidized gluten free food, for which you would need an official celiac diagnosis. So be sure to find out before deciding to opt out of the biopsy.

Also it is critically important that you do NOT go gluten free until after the endoscopy. Biopsies look for damage, which can heal quickly on the gluten free diet.

Welcome to the forum, you will learn a lot here.
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#827078 Outgrowing Celiac

Posted by MitziG on 03 October 2012 - 05:04 AM

Exactly. I was one of those who had several periods of "remission" throughout my teenage and young adult years. I had been told by doctors that I had outgrown my "wheat allergy" and since it didn't make me sick anymore I believed them. But celiac stays forever, sometimes quietly lurking, waiting for the next illness or stressful event to make it active again. It is frustrating when you talk to people who swear they or their children outgrew it. I simply tell them that doctors only recently learned that the disease never actually goes away, even when it seems dormant, and suggest they look into some recent research. Its pointles to send them to thei doctors- few of their doctors would even recognize the fact.
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#826698 I Believed

Posted by MitziG on 01 October 2012 - 05:58 PM

I believed I had some weird, unidentifiable disease that would ultimately kill me. I believed I was slowly dying. I believed I would never feel better. So glad I was wrong!
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#826185 Gluten Sensitivity Or Celiac

Posted by MitziG on 29 September 2012 - 03:35 AM

I would not consider her chance of celiac small at all. She has the genes. She has symptomms. She has a positive response to a gluten-free diet. She is a celiac.

Blood tests in young children are not great at catching celiac disease (even worse when they don't run a full panel!)

It is probably the rice cakes- guessing they were cc with oats, which would not have to be labeled. Most oats are cc with wheat.

As for PF Changs...could be anything. Sadly, the risk with eating out is a big one, and those who have severe reactions like your daughter often opt to just stop taking that risk!
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#825151 So Exasperated With Lazy People...

Posted by MitziG on 23 September 2012 - 08:22 PM

And if you don't know "what cutting dairy out will do"...well I have to ask,"what rock have you been hiding under?!" Gluten and casein are the two most inflammatory foods there are, and are responsible for a myriad of health issues, for more people than just celiacs!
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#825004 Blood Test Results

Posted by MitziG on 22 September 2012 - 07:33 PM

Actually, the stats you quoted for the DGP were for the older test. The new ones have something like 99% specificity.

For your sake, I hope you are right, and this all goes away. But I wouldn't count on it.
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#824875 Blood Test Results

Posted by MitziG on 22 September 2012 - 07:31 AM

Also wanted to add...in regard to blood tests. The only tests my doc ran were the TTG IGG and TTG IGA. The IGG test was 6, a weak positive (less than 4 was normal) the IGA test was negative. Yet when I had my endoscopy the damage was so severe it was visible to the naked eye- dr dx me on the spot and said it was clear I had celiac for many years. Biopsy showed total villous atrophy.

Do not let your doctors tell you that you have to be highly positive to have celiac! Positive is positive. It is sort of like being a "little bit pregnant"!
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#824874 Blood Test Results

Posted by MitziG on 22 September 2012 - 07:23 AM

I know you don't want this- none of us did either. The reason everyone is being so insistent is because we have all "been there, done that." Yes, you would think a GI who specializes in diseases of the gut would know what he is talking about- but the truth is, few do. There is a lot of relatively new research on Celiac Disease that the vast majority of docs are in the dark about. Celiac isn't profitable. There is no pill they can prescribe. Therefore, they aren't being educated about the latest info by pharmaceutical reps. They just don't know. Those of us who have suffered have scoured every bit of info available...we KNOW.

Yes, your ttg could be elevated because of inflammation- possibly. But the DGP? Nope. Gliadin IS gluten. Your body is making antibodies against gluten. Period. If you can't accept that, get the EMA- I bet it is positive too.

As for feeling better when you eat gluten, that is typical. Many of us, myself included, craved gluten, and felt sick when we didn't eat it. Gluten has an opiod effect, just like a heroin addict feels better when they take a hit, it doesn't mean they need heroin, or that it isn't bad for them. I never felt sick after eating gluten- but I felt crappy fatigued all the time, and I had bouts of "IBS" type symptoms. I was only tested because my son and daughter were diagnosed. And I found out the reason I felt like death all the time. And now I feel pretty darn great.

None of us would wish celiac on you. But we can see pretty clearly what many can't, simply because of experience. In a perfect world, you could rely on your doctor totally to give you the best advice. But you are hearing from people who have been misled and failed by those same doctors, for years and years, before FINALLY finding out what the problem was. I hope you will hear what we are telling you.
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#824555 Transglutaminase Iga Ab - What Test Is This?

Posted by MitziG on 20 September 2012 - 11:04 AM

And colonoscopies are big money makers for docs and not that much value. Do some research- it soured me on them!
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#824294 Blood Test Results Show No Celiac In Delayed-Growth Child

Posted by MitziG on 19 September 2012 - 06:08 AM

I would personally just consider him celiac and start him on the diet. Perhaps the doc will agree to dx him based on resolution of the growth issue on a gluten free diet.

The bloodwork isn't going to show it as long as he is deficient in iga and igg.

It sounds like they didn't even biopsy the duodenal bulb so of course they missed it.

I would say enough is enough.
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#821642 Looking For Opinions

Posted by MitziG on 05 September 2012 - 06:21 AM

I am going to provide you the opportunitty to save a lot of time, pain and frustration.

You are not likely to test positive on any celiac test. It isn't impossible, but it isn't likely.

You either have celiac or gluten intolerance. Your gi will suggest you do a gluten challenge, probably eating a full load of gluten for several months, at which point he will test you. If you have celiacs, you have a 70% chance of getting a positive test.

If you are gluten intolerant, you have a zero % chance of getting a positive test.

Here is what you know- gluten makes you feel bad. So do a bunch of other foods.

Here is what WE know. If gluten makes you feel bad, you are either celiac or gluten intolerant. If you are either of those things than even teeny bits of cross contamination (such as with shared cookware or oats) will make you continue to feel bad. It will also cause you to develop other food intolerances.

Avoiding gluten is not like "cutting back" on other foods. It has to be an all or nothing thing if you want to heal. We can't tell you if you have celiac, but we CAN tell you that with your symptoms and another autoimmune disorder already going on, you are NOT barking up the wrong tree! Gluten is your root issue, whether you have celiac or not. So...your choice now. You can spend the next few months in misery trying to get a test result that proves this (but quite possibly will not) or you can accept the obvious and commit yourself to being 100% gluten free and a few months from now probably be seeing a positive change in your situation. I think we all understand wanting the "validation" of a diagnosis, and there isn't anything wrong with that. But they are hard to come by and you will be subjecting yourself to a lot for that "chance".
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