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Was This A Diagnosis? Confused.

mamarie

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mamarie Rookie
mamarie
Posted

I saw a neurologist for TMJ headache/jaw pain I've had chronically for the past year. He ran a ton of blood tests to see if there was some underlying issue at play. He told me that the blood tests showed that I was wheat intolerant and that I need to stop eating wheat and I should read a book on Celiac Disease.

I'm confused. Does a blood test show that I *do* have Celiac Disease? Or does it just show that I'm gluten intolerant? Should I get tested further for Celiac? If I have Celiac, I need to know since it is such a lifestyle change!!!I have had these health issues and never made a connection before, but now I'm wondering if they are related at all to Celiac (or just gluten). My other question is, can I have these health issues just from eating gluten, and NOT having Celiac? Or would these things be indicitive of having Celiac?

TMJ joint and muscle pain - chronic

restless leg syndrome- comes and goes

bloating after I eat anything. (funny... i used to tell people that I fill up after eating a dinner roll. hmmm)

wrist and thumb pain- comes and goes

hypoglycemia

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mamarie Rookie
mamarie
Posted
  • Author

I meant to add too, that the blood tests showed I was very, very low in vitamin D. Which again, I'm wondering if that's related to Celiac.

Skylark Collaborator
Skylark
Posted

I'm not sure how he made the jump from TMJ to celiac but at least he's one of the doctors who is aware. Yes, the bloating is a celiac thing. I'm not sure about your other problems, but I think restless leg is sometimes a potassium or calcium imbalance which can come from malabsorption. Low vitamin D can be a result of malabsorption too.

What were the blood tests? Anti-gliadin is suggestive of gluten intolerance but it's not a very strong result. Finding anti-endomysial antibodies and/or anti-tTG antibodies is pretty indicative of celiac. Did he ask you to schedule biopsy?

mamarie Rookie
mamarie
Posted
  • Author

He was asking if I had any other health issues, so I told him about the above list. That's why he decided to order all these blood tests. I'm not sure exactly what the blood tests were. (I should have asked him for the results myself) He didn't tell me to schedule a gastric biopsy. Just told me to stop eating wheat and read a book on celiac. But I'm confused because I don't think he said the blood tests showed I had celiac, but just that they showed I was wheat intolerant. I'm wondering if *all* my other health issues are related now. Do you think I should go and get more testing done? See another kind of doctor? Thank you for your response.

I'm not sure how he made the jump from TMJ to celiac but at least he's one of the doctors who is aware. What were the blood tests? Finding anti-endomysial antibodies and/or anti-tTG antibodies is pretty indicative celiac. Yes, low vitamin D can be a result of celiac malabsorption. Did he ask you to schedule a gastric biopsy?

lucia Enthusiast
lucia
Posted

I saw a neurologist for TMJ headache/jaw pain I've had chronically for the past year. He ran a ton of blood tests to see if there was some underlying issue at play. He told me that the blood tests showed that I was wheat intolerant and that I need to stop eating wheat and I should read a book on Celiac Disease.

I'm confused. Does a blood test show that I *do* have Celiac Disease? Or does it just show that I'm gluten intolerant? Should I get tested further for Celiac? If I have Celiac, I need to know since it is such a lifestyle change!!!I have had these health issues and never made a connection before, but now I'm wondering if they are related at all to Celiac (or just gluten). My other question is, can I have these health issues just from eating gluten, and NOT having Celiac? Or would these things be indicitive of having Celiac?

TMJ joint and muscle pain - chronic

restless leg syndrome- comes and goes

bloating after I eat anything. (funny... i used to tell people that I fill up after eating a dinner roll. hmmm)

wrist and thumb pain- comes and goes

hypoglycemia

The usual procedure to make an absolute medical diagnosis for Celiac is 1) to test the blood for antibodies, and if the test is positive 2) to perform an endoscopy of the small intestine to see if damage is present. If the endoscopic biopsy of the small intestine reveals damage, then a patient is diagnosed with Celiac. This is considered the "gold standard" and some doctors will only accept it in making a Celiac diagnosis.

However, many, many people have symptoms that are related to eating gluten who don't qualify for a medical diagnosis. The blood test and even the endoscopic biopsy are not 100% accurate, and often produce false negatives (although never false positives). People who respond to a gluten-free diet but do not meet the diagnostic criteria for Celiac are lumped into the category "gluten-intolerant". My doctor says that he believes that so-called "gluten intolerance" is just an early stage of Celiac disease. If I keep eating gluten, I will damage my small intestine.

The most important thing for you to know is if you have a response to the gluten-free diet. You have symptoms that indicate Celiac (all of the ones you listed). If they get better once you cut gluten out of your diet, then you know you need to stop eating gluten.

You're actually fortunate to have a doctor who is familiar enough with Celiac/gluten-intolerance to test for it. It takes 9 years on average for most people with this disease to be diagnosed according to the Celiac center at Columbia University.

Best to you.

lucia Enthusiast
lucia
Posted

Also, if you want to look into Celiac/gluten intolerance, I'd recommend "Celiac Disease: A Hidden Epidemic" by Peter Green who heads up the Celiac center at Columbia. Browsing through this message board would be a great resource too.

mamarie Rookie
mamarie
Posted
  • Author

Thank you so much for your responses! I think I'm understanding things better now. One last question I have, is if I'm just "gluten intolerant", do I need to be AS careful with gluten like if DID have celiac? My understanding is with Celiac, one can not even have a trace of wheat. Must a gluten intolerant person be as strict?

Thanks again!! I really appreciate it. I'm going to definitely get a endoscopy done.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you so much for your responses! I think I'm understanding things better now. One last question I have, is if I'm just "gluten intolerant", do I need to be AS careful with gluten like if DID have celiac? My understanding is with Celiac, one can not even have a trace of wheat. Must a gluten intolerant person be as strict?

Thanks again!! I really appreciate it. I'm going to definitely get a endoscopy done.

There are some here like myself who consider both gluten intolerance and celiac to be the same thing. Both cause antibodies to attack the body and both need to be just as concerned with small amounts of gluten. You do need to be just as strict. If you are going to pursue a biopsy do not go gluten free yet. However it seems you have a wise doctor who has given you a diagnosis so whether you want to continue on gluten for a biopsy that may or may not show an accurate result is up to you. Myself I would consider myself diagnosed and just start the diet. And yes all your other issues could be related to gluten. Time will tell.

AlysounRI Contributor
AlysounRI
Posted

Thank you so much for your responses! I think I'm understanding things better now. One last question I have, is if I'm just "gluten intolerant", do I need to be AS careful with gluten like if DID have celiac? My understanding is with Celiac, one can not even have a trace of wheat. Must a gluten intolerant person be as strict?

Mamarie, if you are just gluten intolerant, yes you need to be just as careful.

If 1 in 133 persons is Celiac (1-3 million people) then the estimate is that there are 15-20 million more people who are gluten intolerant.

And that is a huge number.

You will find that when you go gluten free and it all expels you will probably be more sensitive to even a trace.

Not being celiac means that you will not be incurring damage to your intestines but it doesn't mean that you won't be harming your insides in any way.

So yes, be just as vigilant against the poison and your reward will be a body and mind that works the way it's supposed to :)

~Allison

nora-n Rookie
nora-n
Posted

If you want some more celiac testing, you have to do so before you try a gluten free diet, or go back on a gluten challenge later.

Yes, teh low vitamin D would be enough to look for the cause of the malabsorption.

Get a copy of the test results, and maybe the right tests were ordered.

the gold standard is a positive biopsy of the small intestine.

Usually one gets the ordinary blood tests, and if tehy are positive, or there are sympoms, then they do the biopsy.

Even some kind of positive blood tests would help you go on a gluten free diet.

You need to be just as strict.

mamarie Rookie
mamarie
Posted
  • Author

Thank you. Yes, I don't plan to stop eating gluten until after my endoscopy. Although I have to say, I'm almost 100% convinced all my health issues are related now. I hope it doesn't take long to schedule the endoscopy. I want to see results now by starting the diet.

I've been researching the last few days, and now I'm wondering if I've been describing my facial pain problem wrongly to doctors. Since the pain involved my jaw joints and pain to the muscles surrounding it, I assumed it was TMJ. But the more I'm reading, the more I think it would be catogorized as Myofascial Pain Syndrome, which is in the same class as Fibromyalgia... which seems indicative of Celiac.

So, needless to say... I'm more convinced then ever that all my problems are gluten related!!! I can't tell you how happy I am to have this figured out for myself. A year and a half ago is when this facial pain started happening. All of a sudden it was unrelenting chronic pain. In the last few months, I've noticed other pain... wrists and thumbs, elbows, and leg pain. Restless leg syndrome has been there and comes and goes. I've also lost 10 pounds in the last few months without explanation. I haven't changed my eating habits. And now to know that my vitamin d levels are extremely low... well, it just seems like it's all coming together. My neurologist prescribed 50,000 i.u. of D a DAY!! This seems indicitive of a malabsoption issue, yes?

If you want some more celiac testing, you have to do so before you try a gluten free diet, or go back on a gluten challenge later.

Yes, teh low vitamin D would be enough to look for the cause of the malabsorption.

Get a copy of the test results, and maybe the right tests were ordered.

the gold standard is a positive biopsy of the small intestine.

Usually one gets the ordinary blood tests, and if tehy are positive, or there are sympoms, then they do the biopsy.

Even some kind of positive blood tests would help you go on a gluten free diet.

You need to be just as strict.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you. Yes, I don't plan to stop eating gluten until after my endoscopy. Although I have to say, I'm almost 100% convinced all my health issues are related now. I hope it doesn't take long to schedule the endoscopy. I want to see results now by starting the diet.

I've been researching the last few days, and now I'm wondering if I've been describing my facial pain problem wrongly to doctors. Since the pain involved my jaw joints and pain to the muscles surrounding it, I assumed it was TMJ. But the more I'm reading, the more I think it would be catogorized as Myofascial Pain Syndrome, which is in the same class as Fibromyalgia... which seems indicative of Celiac.

So, needless to say... I'm more convinced then ever that all my problems are gluten related!!! I can't tell you how happy I am to have this figured out for myself. A year and a half ago is when this facial pain started happening. All of a sudden it was unrelenting chronic pain. In the last few months, I've noticed other pain... wrists and thumbs, elbows, and leg pain. Restless leg syndrome has been there and comes and goes. I've also lost 10 pounds in the last few months without explanation. I haven't changed my eating habits. And now to know that my vitamin d levels are extremely low... well, it just seems like it's all coming together. My neurologist prescribed 50,000 i.u. of D a DAY!! This seems indicitive of a malabsoption issue, yes?

It sounds like the facial pain may be nerve related along with some of your other issues. Some sublingual B12 might be helpful with healing the nerve issues. Just make sure to let your doctors know you are taking it. I hope they get you in for the endo soon. If the schedule it a ways away try asking to be on a cancellation list if it is possible for you to go in on a short notice. The day of the endo you can start your gluten free trial, you don't need to wait for the results.

bluebonnet Explorer
bluebonnet
Posted

There are some here like myself who consider both gluten intolerance and celiac to be the same thing. Both cause antibodies to attack the body and both need to be just as concerned with small amounts of gluten. You do need to be just as strict. If you are going to pursue a biopsy do not go gluten free yet. However it seems you have a wise doctor who has given you a diagnosis so whether you want to continue on gluten for a biopsy that may or may not show an accurate result is up to you. Myself I would consider myself diagnosed and just start the diet. And yes all your other issues could be related to gluten. Time will tell.

completely agree with this! if you want the biopsy, schedule asap. i went gluten free for 3 1/2 months and started a gluten challenge (which is over in a few days!) BUT its not the way to go. i was feeling better and know i was healing and now i feel like all that is undone with my challenge. sounds like you got your diagnosis but some people (including doctors) think the "gold standard" biopsy is the true confirmation (which again is a hit or miss). my doctor diagnosed me via labs and genetic testing + positive dietary response (and we can add horrible response to my gluten challenge) but i'm being scoped for other issues as well.

good luck ... hope you feel better! :)

mamarie Rookie
mamarie
Posted
  • Author

Thanks everyone for their responses. I saw an internal medicine doctor today and they scheduled an endoscopy for monday morning (next week!). I'm so glad they are willing to do it so soon. Even if the results are negative, I plan to start a gluten free diet anyway and see if my symptoms improve.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks everyone for their responses. I saw an internal medicine doctor today and they scheduled an endoscopy for monday morning (next week!). I'm so glad they are willing to do it so soon. Even if the results are negative, I plan to start a gluten free diet anyway and see if my symptoms improve.

I am glad they are getting you in quickly. You can start the diet the day the biopsy is done, there is no need to wait for the results.

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