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I Think It's Celiac

Youdah

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Youdah Newbie
Youdah
Posted

I have been diagnosed with "fibromyalgia" for years. This means that doctors couldn't find anything wrong, so I got a diagnosis that means "you're sick, but we don't know why." I was certain that "something" must be causing all my symptoms, and so I set out to figure out what that was. One theory of fibromyalgia is a food intolerance. So, I decided to see if that was causing the fibromyalgia: IBS with bloating and abdominal tenderness, muscle aches and pain, arthritis, brain fog, headaches, extreme fatigue, etc.

Recently, I started to list everything I ate, then rated my symptoms the next day to see if there were worsening of symptoms after eating any certain food. It took me awhile, but finally I started to see a pattern. I always had worse symptoms after eating any breads or pasta. It wasn't long before I found "gluten" as a possible source. So, I eliminate all gluten...and lo and behold, my symptoms are ALL going away or lessening. I haven't felt this good, for this long, in many many years.

I have an appointment next month to discuss this with my doc. But, I'm about 100% certain that's what's been happening. Gluten!

I am relieved to have my symptoms getting better, but I'm also furious! Something like this shouldn't have taken this long to get diagnosed...the years I've suffered! And, it took the determination of the patient to do the doctor's job...that is, diagnosis!

I guess I'm asking if this sounds familiar? And, I guess I'm looking for sympathy? WHAT tests can be run AFTER I have eliminated gluten? Thanks!

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mushroom Proficient
mushroom
Posted
I have been diagnosed with "fibromyalgia" for years. This means that doctors couldn't find anything wrong, so I got a diagnosis that means "you're sick, but we don't know why." I was certain that "something" must be causing all my symptoms, and so I set out to figure out what that was. One theory of fibromyalgia is a food intolerance. So, I decided to see if that was causing the fibromyalgia: IBS with bloating and abdominal tenderness, muscle aches and pain, arthritis, brain fog, headaches, extreme fatigue, etc.

Recently, I started to list everything I ate, then rated my symptoms the next day to see if there were worsening of symptoms after eating any certain food. It took me awhile, but finally I started to see a pattern. I always had worse symptoms after eating any breads or pasta. It wasn't long before I found "gluten" as a possible source. So, I eliminate all gluten...and lo and behold, my symptoms are ALL going away or lessening. I haven't felt this good, for this long, in many many years.

I have an appointment next month to discuss this with my doc. But, I'm about 100% certain that's what's been happening. Gluten!

I am relieved to have my symptoms getting better, but I'm also furious! Something like this shouldn't have taken this long to get diagnosed...the years I've suffered! And, it took the determination of the patient to do the doctor's job...that is, diagnosis!

I guess I'm asking if this sounds familiar? And, I guess I'm looking for sympathy? WHAT tests can be run AFTER I have eliminated gluten? Thanks!

Welcome to the forum, Youdah, and welcome to the frustrations that so many of us have experienced. If it weren't for self-diagnosis a lot of us would have *no* diagnosis except IBS and fibromyalgia (with a few psychiatric categtories for "all in your head" thrown in). Your symptoms are pretty classic for all of us, but apparently not for the doctors.

The two tests for celiac, the blood test and the intestinal biopsy, both require that you have been eating gluten solidly for at least 6-8 weeks go be accurate. I don't know how long you have been gluten-free, but probably long enough for sufficient healing to have taken place that the tests will not be accurate. That's another *gotcha*. Because we have to diagnose ourselves by going gluten free, we then cannot get an official diagnosis without poisoning ourselves for another two months--aaargh! We share your frustration, believe me.

One avenue left is to do the Enterolab testing (a stool test) which seems to show (others correct me if I am wrong here) the gliadin reactions for a little longer after going gluten free than the blood test. You can also have them do the genetic test to see if you carry any of the recognized celiac genes, although they are discovering new ones all the time. This would at least tell you if it is possible for you to have celiac. There are several forum members who are wizards in analyzing genetic testing and explaining it.

It is up to you to decide what to do. For some of us, the elimination of the symptoms is enough and we don't bother with formal diagnosis. Others need more. Anyway, congrats for figuring it out and I am glad you are feeling better now.

Neroli

mamaw Community Regular
mamaw
Posted

Hello & welcome

No test will be accurate if you stop eating gluten before testing. Do Not stop gluten until after your testing is complete. You are just wasting your time & money if you stop before .......

hal000 Rookie
hal000
Posted

Hi Youdah.....I could have written exactly the same thing.

I went for 12 years with being told it was all in my head, there was nothing wrong and finally told it was Chronic Fatigue Syndrome but with no advice on how to overcome it.

Looking back all the symptoms were there at the very beginning but I didn't put the pieces of the puzzzle together.

I'm angry with the healthcare professionals but if I'm honest I'm also angry with myself for not realising sooner.

Having said that - the hope of feeling well again outweighs all the negative stuff..............hal

I have been diagnosed with "fibromyalgia" for years. This means that doctors couldn't find anything wrong, so I got a diagnosis that means "you're sick, but we don't know why." I was certain that "something" must be causing all my symptoms, and so I set out to figure out what that was. One theory of fibromyalgia is a food intolerance. So, I decided to see if that was causing the fibromyalgia: IBS with bloating and abdominal tenderness, muscle aches and pain, arthritis, brain fog, headaches, extreme fatigue, etc.

Recently, I started to list everything I ate, then rated my symptoms the next day to see if there were worsening of symptoms after eating any certain food. It took me awhile, but finally I started to see a pattern. I always had worse symptoms after eating any breads or pasta. It wasn't long before I found "gluten" as a possible source. So, I eliminate all gluten...and lo and behold, my symptoms are ALL going away or lessening. I haven't felt this good, for this long, in many many years.

I have an appointment next month to discuss this with my doc. But, I'm about 100% certain that's what's been happening. Gluten!

I am relieved to have my symptoms getting better, but I'm also furious! Something like this shouldn't have taken this long to get diagnosed...the years I've suffered! And, it took the determination of the patient to do the doctor's job...that is, diagnosis!

I guess I'm asking if this sounds familiar? And, I guess I'm looking for sympathy? WHAT tests can be run AFTER I have eliminated gluten? Thanks!

Tallforagirl Rookie
Tallforagirl
Posted
One avenue left is to do the Enterolab testing (a stool test) which seems to show (others correct me if I am wrong here) the gliadin reactions for a little longer after going gluten free than the blood test.

Just to note that the Enterolab testing cannot diagnose celiac disease, only gluten sensitivity.

Youdah Newbie
Youdah
Posted
  • Author

I'm not sure that I'm willing to go through more gluten just to prove I shouldn't be eating gluten. Catch22 is right! I'd like the diagnosis, though, because it should count for a medical expense to have to buy all the gluten free foods. But, that isn't important enough to feel awful again.

Thanks for the support. It's nice to have some understanding.

Yes, I've been through the "it's all in your head" lectures. The AMA drones think that if something doesn't show up on routine labwork, or the pharmaceutical companies haven't made a little purple pill especially for your group of symptoms, then there must not be anything really wrong with you.

Then, I was forever getting new prescriptions, at least one new one with every office visit. Of course, the medications caused side-effects that made me feel worse...so I eventually flushed them all and said I wouldn't take them anymore because they didn't help and made me feel worse. Then I got tagged for being "non-compliant."

I felt better when I started taking vitamins (no wonder if my body wasn't absorbing any vitamins and nutrients from food), but doctors only laughed and used it as more proof that vitamins were having a "placebo" effect so I was susceptible to hysterical claims and hypochondria. Now, I don't see myself as "hysterical," and think I'm a pretty calm, rational person. But, these doctors made me feel crazy sometimes.

I read somewhere today that most celiac disease isn't diagnosed for 11 years! That's about right.

Also, from my reading today...I'm a type 1 diabetic, so there should've been a screening done just because there's a high incidence of one with the other.

(BIG SIGH) well, when I get done being furious at dumb doctors, this will be good. I can move on and start having a life again! THANKS!

mushroom Proficient
mushroom
Posted
Then I got tagged for being "non-compliant."

I felt better when I started taking vitamins (no wonder if my body wasn't absorbing any vitamins and nutrients from food), but doctors only laughed and used it as more proof that vitamins were having a "placebo" effect so I was susceptible to hysterical claims and hypochondria. Now, I don't see myself as "hysterical," and think I'm a pretty calm, rational person. But, these doctors made me feel crazy sometimes

You got it right there. Every sane thing you do to move yourself towards a proper diagnosis is used against you as being "non-compliant, hysterical, hypochondriacal or just plain nuts, when we are probably the sanest patients they have seen in a while.

However, I guess I was pretty dumb because I didn't self-diagnose until I was 67, and I first started having some symptoms in high school. And I'm now left with RA and psoriasis which are resisting all efforts to eliminate them.

Sorry to hear about your Type 1 diabetes; I hope you are able to have some positive effect on that :blink: If they can't figure out the one, they can't make the connection to the other, I guess.

Now that you have put all the dots together and formed a picture of the elephant in the room, you should be able to put it to work to help you. Good luck on your journey into a new life of health and wellbeing. Don't forget to have your PCP check you thoroughly for dietary deficiencies--the biggies are Vitamins D, B12, B complex, iron, magnesium, zinc. If your D is low get a DEXA scan for bone density. You can take a sublingual B12 (RiceGuy recommends the methylcobalamin) and then talk to your PCP about the rest. This is the point where you really *must* take control of your care and make your doctor work for you.

Good luck and hugs.

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Youdah Newbie
Youdah
Posted
  • Author
However, I guess I was pretty dumb because I didn't self-diagnose until I was 67, and I first started having some symptoms in high school. And I'm now left with RA and psoriasis which are resisting all efforts to eliminate them.

No, I don't think you're dumb. If you are, then I am. We aren't trained to diagnosis, doctors are! It's a wonder than anyone figures it out at all.

I haven't been diagnosed with RA, although I insisted on all the tests for it. Instead, a lot of the cartilage in most of my joints deteriorated. I'm so sorry RA got triggered for you also.

Sorry to hear about your Type 1 diabetes; I hope you are able to have some positive effect on that :blink: If they can't figure out the one, they can't make the connection to the other, I guess.

I have told doctors for years that my blood sugar went crazy sometimes, but I couldn't figure out why. I just got a lecture about "compliance" on my diabetic diet, and I was already being more compliant on diet than they could ever appreciate. It makes sense now, that my blood sugar would go high every time it started to fight a "foreign invader" (gluten).

Now that you have put all the dots together and formed a picture of the elephant in the room, you should be able to put it to work to help you. Good luck on your journey into a new life of health and wellbeing. Don't forget to have your PCP check you thoroughly for dietary deficiencies--the biggies are Vitamins D, B12, B complex, iron, magnesium, zinc. If your D is low get a DEXA scan for bone density. You can take a sublingual B12 (RiceGuy recommends the methylcobalamin) and then talk to your PCP about the rest. This is the point where you really *must* take control of your care and make your doctor work for you.

I had already requested some of these...and they came back low. I have a new doctor that I started seeing a few months ago. She's been very open to "alternative" therapies, and she was the first that didn't laugh when I told her glucosamine helped, and she even wrote a note to insurance that I should be taking it. She also wanted me to start taking magnesium, manganese, Vit D, etc. So, I think she'll be open to helping -- if she doesn't suggest these things herself. I was taking B-complex, too, but saw that it contained wheat, so it went into the bin. I'll have to get some more.

QUESTION: Did anyone feel a little strange after cutting out all gluten? I'm on day 6. I used to nap in the afternoon, because of fatigue. Suddenly, I'm not at all drowsy and the fatigue is so much less that I don't know what to do with myself. But, it isn't just that...it's that I don't have an appetite either, and nothing sounds good to eat (except a big piece of cake, maybe). I've noticed that a cup of coffee (caffeine) is hitting me really hard with jitters, instead of needing the stuff just to get going in the morning, etc. It feels like my body is in over-drive...maybe it needs a little time to turn-off the responses to gluten? Anyway, did anyone else have something similar?

You folks are great. Thank you so much for taking the time to listen to me and answer.

RollingAlong Explorer
RollingAlong
Posted

Here's a post from the Hyperlipid bog with an idea of why glucosamine works. Supposedly it fits into the receptor that gluten fits into. Hyperlipid postwith comment on glucosamine

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