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I've Figured Out What's Wrong...

QueenOfPain

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QueenOfPain Rookie
QueenOfPain
Posted

Not sure if you remember me, but I posted on here about a month ago. I had positive blood work for Celiac (b/c of increased IGA antibody levels--the other parts of the blood test were negative). And, a negative biopsy. I decided to go gluten-free for 12 weeks. WHICH WAS SOOOO HARD FOR ME. They drew my blood last Monday for another Celiac test. Today I found out that it came back negative. My antibody levels obviously responded to the diet.

So apparently I guess I either have Celiac or some type of gluten sensitivity. I wonder how you can tell the difference??? I started eating gluten again last Thursday and I began having my daily headaches. My side cramps seem to be returning, too as of today. I haven't had a crazy reaction to it, though. I think I'm going to just eat gluten like normal for the rest of the month. And my New Year's resolution will be to try going gluten-light and see if my symptoms lesson. I really don't want to cut gluten out of my diet 100%...

Just wanted to let you all know how my story ended. I'm sure I'll be posting more on your forum in the future. Thanks again for the advice you all gave me. And THANK YOU for encouraging me to stay on the diet! Now my medical mystery is pretty much solved.

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tom Contributor
tom
Posted
I started eating gluten again last Thursday and I began having my daily headaches. My side cramps seem to be returning, too as of today.

Sounds convincing to me.

Now my medical mystery is pretty much solved.

Yay!! The gluten-free diet isn't so hard once you get used to a few things.

Congrats for finding an answer.

And my New Year's resolution will be to try going gluten-light and see if my symptoms lesson. I really don't want to cut gluten out of my diet 100%...

WHAAAAAAAAAAAT???????

Daily headaches & cramps & most likely more symptoms to come????

I wish "gluten-light" were enough. :(

I tried that in the 90s and basically LOST 7+ yrs of my life.

I'm STILL barely able to work even part-time. :(

Certainly if it's celiac - and perhaps if it's not - you can either be 100% gluten-free ALL the time or invite a lifetime of increasingly serious, sometimes debilitating, health problems.

QueenOfPain Rookie
QueenOfPain
Posted
  • Author
WHAAAAAAAAAAAT???????

Daily headaches & cramps & most likely more symptoms to come????

I wish "gluten-light" were enough. :(

I tried that in the 90s and basically LOST 7+ yrs of my life.

I'm STILL barely able to work even part-time. :(

Certainly if it's celiac - and perhaps if it's not - you can either be 100% gluten-free ALL the time or invite a lifetime of increasingly serious, sometimes debilitating, health problems.

Well, a couple of months ago my GI doc said that if I do have Celiac or gluten sensitivity that she thinks it's a mild case--since my biopsies came back negative and my blood test results don't show damage... just raised antibody levels. I have to see what I can get away with. If my symptoms stay bad after 6 months to a year of being gluten-light then I'll consider going 100% gluten-free again. I've had this for about 19 years now, I figure one more year of suffering to discover my limits is liveable. I don't know maybe I'm just being stupid. Sorry to hear you've had such a tough time with this mess. Thanks for your input!

Jestgar Rising Star
Jestgar
Posted
Well, a couple of months ago my GI doc said that if I do have Celiac or gluten sensitivity that she thinks it's a mild case--

Would she recommend you continue eating deep fried cheese sticks if you had only a mild case of heart disease? I don't understand the logic here.

nora-n Rookie
nora-n
Posted

If your biopsies are negative, and blood tests only slightly positive, you might have (maybe) pseudo-celiac, something that can happen if you have Lyme.

There have been a lot of postings about that here.

It should go away after Lyme is treated, they say.

Some here have started tolerating gluten again after lyme treatment.

nora

ravenwoodglass Mentor
ravenwoodglass
Posted
Well, a couple of months ago my GI doc said that if I do have Celiac or gluten sensitivity that she thinks it's a mild case--since my biopsies came back negative and my blood test results don't show damage... just raised antibody levels. I have to see what I can get away with. If my symptoms stay bad after 6 months to a year of being gluten-light then I'll consider going 100% gluten-free again. I've had this for about 19 years now, I figure one more year of suffering to discover my limits is liveable. I don't know maybe I'm just being stupid. Sorry to hear you've had such a tough time with this mess. Thanks for your input!

Your doctor leaves a great deal to be desired or he/she needs a new vacation home. You can't be a little bit celiac and the idea that since you have had issues for 19 years another year on gluten won't hurt is so sad. Your body is having an autoimmune response to gluten, the reason why you showed up positive on blood work and then negative after being gluten free for 12 weeks. That shows that the diet was working for you. You have celiac, the doctor may not have biopsied the correct place and may have missed the damage. You need to be gluten free not gluten light. There is a real possibility of your developing another autoimmune issue or even cancer by doing the gluten light routine. Gluten light will not stop the antibody process and you are taking some very real risks. If your doctor had found a cancerous tumor and told you it was small and you just have a mild case of cancer lets wait to do anything for a year so it can grow and see if it spreads to another organ would you think that was good advice too?

rinne Apprentice
rinne
Posted
Well, a couple of months ago my GI doc said that if I do have Celiac or gluten sensitivity that she thinks it's a mild case--since my biopsies came back negative and my blood test results don't show damage... just raised antibody levels. I have to see what I can get away with. If my symptoms stay bad after 6 months to a year of being gluten-light then I'll consider going 100% gluten-free again. I've had this for about 19 years now, I figure one more year of suffering to discover my limits is liveable. I don't know maybe I'm just being stupid. Sorry to hear you've had such a tough time with this mess. Thanks for your input!

Your Doctor is an IDIOT!!!!

When she says, "mild case", what is she saying? What the biopsy does is measure the damage done to our intestines, if damage is done you are in trouble, or headed for much worse trouble if you continue, gluten light or gluten heavy, you will do more damage. You can, in fact, do enough damage, that you will never heal.

Check out the "Marsh test" which is the standard for the biopsy, there are four stages to the destruction of the villi, at stage 1 & 2 the damage is often missed, at stage #4 the damage may be permanent. While doctors consider this the "gold standard" for diagnosing Celiac I do not, I see it as another example of their absolute ignorance of human health and possibly the worst diagnostic tool for dealing with digestive disorders.

So your could be in the 1st or 2nd stage and she would not see it, do you have any idea how many people are reassured that they don't have Celiac and go on to have Grave's Disease, Diabetes, Fibro, Arthritis.......and then are finally diagnosed with Celiac? I don't, but on this board alone I have read many people stories of just that.

...... I had positive blood work for Celiac (b/c of increased IGA antibody levels--the other parts of the blood test were negative). And, a negative biopsy. I decided to go gluten-free for 12 weeks. WHICH WAS SOOOO HARD FOR ME. They drew my blood last Monday for another Celiac test. Today I found out that it came back negative. My antibody levels obviously responded to the diet.

I'm sorry to seem so harsh, I am angry with your Doctor for her ignorance, I understand the desire not to have to change, I knew for many years wheat was bad for me and I mostly avoided it (gluten light :) ) but I didn't understand about gluten. It is everywhere and really for a Celiac there is no "gluten light", gluten is a toxin.

Once I played that game until one day I crossed a line from manageable discomfort for a day or two after indulging to the past five years of illness, a complete collapse of my whole system which including Lyme.

Please take care of yourself, our health is our greatest treasure.

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ShayFL Enthusiast
ShayFL
Posted

I had "no case" according to the labs. But responded to a 100% gluten-free diet with no more migraines, vertigo and neuropathy. Your doctor would have told me to eat gluten like it was going out of style with no concern. :(

I'd find a new doctor. But then again....deep inside....I'll bet you know the answer. We just dont want to EVER change our diet or lifestyle to get well. Most just want a pill.

I honestly hope that by being "gluten light" that you do not acquire other autoimmune diseases (Type 1 diabetes, Lupus, MS, etc. and/or lymphoma and other cancers associated with untreated Celiac).

If you are CELIAC, you cannot eat "gluten light" and not suffer. Even if you nave NO symptoms, the damage is happening inside you at a cellular level which can lead to any and all of the above.

It is your life and your health and no one can tell you what to do with it. We just give information.

Has she ordered a GENETIC test to see if you have Celiac genes? Maybe that would convince you coupled with the POS bloodwork.

RiceGuy Collaborator
RiceGuy
Posted
Well, a couple of months ago my GI doc said that if I do have Celiac or gluten sensitivity that she thinks it's a mild case--since my biopsies came back negative and my blood test results don't show damage... just raised antibody levels. I have to see what I can get away with. If my symptoms stay bad after 6 months to a year of being gluten-light then I'll consider going 100% gluten-free again. I've had this for about 19 years now, I figure one more year of suffering to discover my limits is liveable. I don't know maybe I'm just being stupid. Sorry to hear you've had such a tough time with this mess. Thanks for your input!

Please interpret the words "mild case" as "you are lucky enough not to have severe damage YET". The ONLY way to prevent further damage is to remain 100% gluten-free. Your limit for gluten, as with any Celiac, is zero. Do not think for a second that another year will be ok. Many of us on this board went from mild, or even unnoticed symptoms, to unbearable, in a very short period of time. You need to understand that damage is being done every moment of every day that those antibodies are present in your blood.

As the saying goes;'you can't be just a little pregnant'.

We all know how it is to confront the dietary changes. Heck, I had been eating a pound of pasta, plus half a loaf of bread every day! When I first contemplated the idea of going gluten-free, I actually said aloud "NO WAY WILL I GIVE UP MY FAVORITE FOODS!". Now, as surprising as it is, I can honestly say I don't wish I could eat any of those gluten-filled foods. That's something I never thought could possibly happen, but it did. I now have new favorites, and many of them. Looking back, my diet was comparatively limited when I ate gluten. So the gluten-free diet has not been limiting, but rather liberating! There's SOOO much more variety to enjoy.

I used to get severe, debilitating migraines, not to mention numerous other things. You couldn't make me eat gluten now, even at gunpoint. It is amazing how we can get past our habits and addictions when our lives are on the line.

So, I think you simply need to understand the gravity of the situation. Celiac is nothing to be trifled with. It's not just headaches or cramps. It is bodily damage which can and does cripple and kill if allowed to continue. Is your current favorite bread really worth all that to you?

QueenOfPain Rookie
QueenOfPain
Posted
  • Author

WELL NEVERMIND! I apparently still don't know what's wrong with me. I just heard from my doctor's office today that they ran the wrong test!!! For some stupid reason, they did not run the full Celiac panel. They only ran one part of the test, and it was the part I had been getting a negative result before the diet. So my 3 months of being gluten-free was all for nothing. Now I have to go back on the diet for 6 to 8 weeks before I can have ANOTHER test run. Hopefully, this time it will be the correct test. I think I am going to go out of my mind here. And I completely agree with all of you that I need to start finding a new doctor. THIS IS RIDICULOUS!!!

Sorry, I think i just really need to vent. I've been going around and around on this stuff since last May. I am so frustrated right now. :(

tom Contributor
tom
Posted
. ..I just heard from my doctor's office today that they ran the wrong test!!!

Oh that's terrible!!!!

So my 3 months of being gluten-free was all for nothing.

Maybe not nothing . .. .wasn't it 3mos mostly free of migraines & cramps?

Don't forget that response to the diet IS a test!! In some cases it's the best test, considering blood test's false negatives & the hit-or-miss nature of endoscopies.

The better Drs understand this.

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