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Saw The Endocrinologist

CGally81

By CGally81
in Coping with Celiac Disease

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CGally81 Enthusiast
CGally81
Posted

I'm still looking for ANSWERS, since I tested negative by that dumb gene test (I don't have HLA DQ2 or DQ8? So what? Most people who suffer symptoms when they eat gluten don't have them either). But I did get at least one thing: validation.

My regular doctor admitted he was stumped and sent me to the various experts he knew. He had me take a blood test for diabetes (to explain my blood sugar drops every time I eat gluten), which turned out negative. He wanted me to see a gastroenterologist, who in turn wanted me to eat gluten for 3 months before getting an endoscopy. (He was at least understanding as to why I wouldn't do that, and was the one who ordered the gene test) And now he sent me to an endocrinologist to see why I get hungry all the time.

The endocrinologist admits he doesn't know, but acknowledges that celiac is different for everyone. I basically told him my whole story with the disorder, of which an abridged version can be seen down below in my signature. But it's a history of symptoms including severe brain fog and feeling like a zombie, and blood sugar drops, followed by discovering the problem, going mostly gluten-free (not realizing some foods I ate still contained gluten), and then suffering from intense never-ending hunger and withdrawal symptoms. Then repeating this to a lesser extent when I removed casein (hunger shot up but not as much, and I'm having the withdrawal symptoms even now but not as much).

He wants me to test myself with a diabetes testing device when I feel weird to see if it's somehow blood sugar related. He wants to see if I have a thyroid problem, since he says many people with celiac do. He also wants me to take another blood test for things he's specifically searching for, and go to a nutritionist to find out what foods I can safely eat that I'd actually want to eat.

It's a shame celiac is so hard to truly understand and look at. The symptoms and aftermath are totally different for EVERYONE (and he acknowledges that), and as for why I'm currently suffering headaches if I don't eat for a while, and feeling knocked out/fatigued to varying degrees when I eat (gluten-free, casein-free) food. These symptoms are slowly getting better, which possibly rules out hypoglycemia, as he admits. But he wants me to take these new tests and visit him in a little over a month.

Finally, validation! Not the same as getting answers, but answers would also have provided validation too, which was something I wanted. I am still not officially diagnosed celiac, but I have now two doctors who believe me, and one who understands (as much as he can, considering the limited knowledge there is on this subject, but at least he knows more about celiac than, say, my gastroenterologist!).

He was a great guy, too. Very understanding, and willing to listen to me spill out my whole story. I know nothing about what endocrinology is, but I came in not expecting much and walked out feeling much better than during any of my other doctor/specialist visits.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Sounds like you found a good doctor. Hopefully he will be able to help you get your remaining issues resolved.

I don't know if you have used a home glucose meter before but if you haven't they aren't hard to get used to. I always ran my fingers under hot water for a minute or two to help bring the blood to the surface, then dried my finger throughly for the stick. That way I was able to get a good drop with the needle set at a low setting. Also pricking a bit to the side on the tip of the finger hurts less than hitting the center.

I'm so glad this was a good visit. Going to a new doctor when we have celiac can be really daunting. So many are so unknowledgeable about it.

mamaw Community Regular
mamaw
Posted

Hello

Be thankful you found a doctor who will try to understand & listen! I don't think there are many around.....I was going to suggest having your thyroid checked. But again most docs only care about the TSH. I disagree with only looking at the TSH

Also checking for Lyme Disease both blood tests might be something else to check out.I would find a doc who specializes in Lyme)

Also there are more genes that are not known yet that may down the road be considered celiac genes..... The DQ4 gene is the only one that one can 100% be declared not a celiac gene.

good luck with your new doc.

mamaw

CGally81 Enthusiast
CGally81
Posted
  • Author

Hello

Be thankful you found a doctor who will try to understand & listen! I don't think there are many around.....I was going to suggest having your thyroid checked. But again most docs only care about the TSH. I disagree with only looking at the TSH

Also checking for Lyme Disease both blood tests might be something else to check out.I would find a doc who specializes in Lyme)

Also there are more genes that are not known yet that may down the road be considered celiac genes..... The DQ4 gene is the only one that one can 100% be declared not a celiac gene.

good luck with your new doc.

mamaw

I looked at the sheet he filled out, and it is the TSH he's testing for. I have another appointment a little over a month from now, so maybe I could ask him to check for more things then.

Reba32 Rookie
Reba32
Posted

a good endocrinologist would test for TSH (thyroid stimulating hormone, which is actually produced by the pituitary gland) as well as T3 and T4 which are both produced by the thyroid. They should also test thyroid antibody levels, to look for possible auto-immune diseases like Hashimoto's (hypo) and Grave's (hyper).

Too much TSH means you're hypothryroid, the pituitary is working overtime to try and get your thyroid to wake up and do something. Low TSH means your thyroid is in hyperdrive, and your pituitary doesn't need to produce stimulant.

Hyper thyroid causes you to be extremely hungry, all the time. Hypo thyroid usually doesn't, but it does cause you to feel terribly sluggish, which could cause you to eat more to try and get more energy, and we usually reach for sugary carb laden foods when we're craving energy, and sugary carb laden foods make us crash, which we then think we're hungry again, so reach for some more sugary carb laden foods, etc etc etc.

A few things I've been reading lately have been finding some links between Celiac disease and Grave's disease, both of which are auto-immune diseases. I also have both. The Grave's disease is currently in remission though, thank goodness!

iffy Rookie
iffy
Posted

Dr. Peter Green's updated version of "Celiac Disease, A Hidden Epidemic" came out yesterday.

Just got my copy, haven't read it yet, but he does give the latest thoughts on diagnosis and

possible treatments.

Iffy

CGally81 Enthusiast
CGally81
Posted
  • Author

a good endocrinologist would test for TSH (thyroid stimulating hormone, which is actually produced by the pituitary gland) as well as T3 and T4 which are both produced by the thyroid. They should also test thyroid antibody levels, to look for possible auto-immune diseases like Hashimoto's (hypo) and Grave's (hyper).

Too much TSH means you're hypothryroid, the pituitary is working overtime to try and get your thyroid to wake up and do something. Low TSH means your thyroid is in hyperdrive, and your pituitary doesn't need to produce stimulant.

Hyper thyroid causes you to be extremely hungry, all the time. Hypo thyroid usually doesn't, but it does cause you to feel terribly sluggish, which could cause you to eat more to try and get more energy, and we usually reach for sugary carb laden foods when we're craving energy, and sugary carb laden foods make us crash, which we then think we're hungry again, so reach for some more sugary carb laden foods, etc etc etc.

A few things I've been reading lately have been finding some links between Celiac disease and Grave's disease, both of which are auto-immune diseases. I also have both. The Grave's disease is currently in remission though, thank goodness!

My amount of hunger has been fluctuating day by day. I ate 2000 calories 4 days ago, but had to eat 3600 2 days ago, and was able to get by with 3000 yesterday.

I didn't experience being hungry all the time until a week after I went gluten-free. (Note my signature) Could it be thyroid related anyway? I want this to end. I hate this condition and I hate these feelings. Headaches and hunger and occasionally feeling fatigued after I eat.

Are these symptoms that might go away after being gluten/casein/soy free long enough? Also, does treating your celiac eventually cause the thyroid problems, if present, to go away?

I have already made an appointment to get my blood tested, and that includes TSH.

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curiousgeorge Rookie
curiousgeorge
Posted

I had the opposite. I was STARVING after I ate gluten pasta. I can eat gluten-free pasta and not be hungry for hours.

CGally81 Enthusiast
CGally81
Posted
  • Author

I had the opposite. I was STARVING after I ate gluten pasta. I can eat gluten-free pasta and not be hungry for hours.

I had blood sugar drops after eating gluten, making me wonder why food made me more hungry after I ate it. But the thing is, after stopping, I became hungry all the time, rather than having individual blood sugar plummets.

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