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Symptoms Related

Brigit

By Brigit
in Coping with Celiac Disease

Recommended Posts

Brigit Apprentice
Brigit
Posted

Hi there,

the doctors didn't know why I was not absorbing iron, and the last three years have been a real pain. Literally. :) My doctor doesn't think though that my symptoms are from the low iron related and wants me to go see a bunch of other specialist, which I don't want to have to do.

My worst symptoms are:

Numb/dead fingers in the mornings when I wake up.

Excessive hair loss.

Slight dizziness from time to time.

And my worst, sore eyes. Like they are bruised. Pretty much sore all day. (My eyesight is fine, I had then tested in December.)

Has anybody else experienced them?

Will these start going away, as my gluten free diet takes effect and my body is able to absorb iron?

Many Thanks!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Have they checked your levels for other vitamins, B12 in particular? You may not be absorbing them from foods. Many of us need to supplement the B's, calcium and magnesium and D3.

cassP Contributor
cassP
Posted

Hi there,

the doctors didn't know why I was not absorbing iron, and the last three years have been a real pain. Literally. :) My doctor doesn't think though that my symptoms are from the low iron related and wants me to go see a bunch of other specialist, which I don't want to have to do.

My worst symptoms are:

Numb/dead fingers in the mornings when I wake up.

Excessive hair loss.

Slight dizziness from time to time.

And my worst, sore eyes. Like they are bruised. Pretty much sore all day. (My eyesight is fine, I had then tested in December.)

Has anybody else experienced them?

Will these start going away, as my gluten free diet takes effect and my body is able to absorb iron?

Many Thanks!

have u been given a complete Celiac panel????? do your doctors even consider that Gluten Intolerance can lead to Iron deficiency??????

you need to have a complete Celiac panel- but also have to be eating enough gluten prior to testing (4-6 slices of bread a day for 4-6 weeks).... its hard to tell someone to do this- as it makes some extremely sick.. so i guess its up to you- maybe you are fine with assuming you have gluten intolerance.

NEXT- B12 deficiency can cause peripheal neuropathy- (numb, tingling extremities)/gluten intolerance can cause b12 def.

ALSO- hair falling out, and pressure behind the eyes can indicate THYROID issues (hypo/hyper or both).. again- gluten intolerance can cause thyroid issues.

much luck to u!!

Brigit Apprentice
Brigit
Posted
  • Author

have u been given a complete Celiac panel????? do your doctors even consider that Gluten Intolerance can lead to Iron deficiency??????

you need to have a complete Celiac panel- but also have to be eating enough gluten prior to testing (4-6 slices of bread a day for 4-6 weeks).... its hard to tell someone to do this- as it makes some extremely sick.. so i guess its up to you- maybe you are fine with assuming you have gluten intolerance.

NEXT- B12 deficiency can cause peripheal neuropathy- (numb, tingling extremities)/gluten intolerance can cause b12 def.

ALSO- hair falling out, and pressure behind the eyes can indicate THYROID issues (hypo/hyper or both).. again- gluten intolerance can cause thyroid issues.

much luck to u!!

Thanks for the reply, appreciate the help!

I've not been given a complete Celiac panel. They were doing all sorts of tests on me, and focusing on just giving me iron drips for now and then going to neck and eye specialists for the worst of my symptoms. They did check my thyroid and the doctor replied saying it just fits into the okay range. They haven't been very helpful or knowledgable and one would think that after 3 years of my iron count just going lower while on medication they'd consider other options.

I have two family members with Celiac, and when I told my doctor that, she said I should go ahead and change my diet for 2 months and then we'll retest my iron levels.

I cut out just wheat a year ago, and felt loads better on that. The thought of having to eat bread for 4 weeks is not a happy thought, it hightens the joint paint, bloating and headaches, which I had to a much smaller degree after cutting out wheat.

I've cut out gluten for a week now, and I know its to soon to see the benefits, but I'm feeling a lot 'lighter' at least. Am not sleeping well at all though, which I've never had a problem with.

Am going to start taking Magnesium and VitB12 supplements. Am currently just on VitC and Iron as that's what the doctor prescribed. Hoping within a few weeks I'll have a healthier body. :)

mushroom Proficient
mushroom
Posted

The Vitamin D3 is a biggie too. Insufficient amounts of that and calcium can lead to osteoporosis.

Brigit Apprentice
Brigit
Posted
  • Author

The Vitamin D3 is a biggie too. Insufficient amounts of that and calcium can lead to osteoporosis.

Is Vit D3 easy to find, I was in my chemist today. And didn't see much Vit D supplements.

cassP Contributor
cassP
Posted

Thanks for the reply, appreciate the help!

I've not been given a complete Celiac panel. They were doing all sorts of tests on me, and focusing on just giving me iron drips for now and then going to neck and eye specialists for the worst of my symptoms. They did check my thyroid and the doctor replied saying it just fits into the okay range. They haven't been very helpful or knowledgable and one would think that after 3 years of my iron count just going lower while on medication they'd consider other options.

I have two family members with Celiac, and when I told my doctor that, she said I should go ahead and change my diet for 2 months and then we'll retest my iron levels.

I cut out just wheat a year ago, and felt loads better on that. The thought of having to eat bread for 4 weeks is not a happy thought, it hightens the joint paint, bloating and headaches, which I had to a much smaller degree after cutting out wheat.

I've cut out gluten for a week now, and I know its to soon to see the benefits, but I'm feeling a lot 'lighter' at least. Am not sleeping well at all though, which I've never had a problem with.

Am going to start taking Magnesium and VitB12 supplements. Am currently just on VitC and Iron as that's what the doctor prescribed. Hoping within a few weeks I'll have a healthier body. :)

then i would say- if you are ok with not a solid diagnosis- then stay off of the gluten-

back to the thyroid: your doc uses the words "just okay", huh? that doesnt sound good. let me just share- that i just got diagnosed with Hashimoto's AND Grave's.. in Oct. my TSH was 11.39. but in 2006 my TSH was 4.64. now my PCP didnt say anything cause back then, the TSH range went up to 5.5. now the range goes up to 4.5 or 5... but up to date Endocrinologists say the range should only go up to 3. and that if you have Hashi- it should really be under 2. i can tell you honestly- my Hypo symptoms have been going on for almost a decade- with possible flare ups starting even earlier than that. i suffered needlessly for too long, and i hope that you dont have to (IF u have a thyroid issue). if i had been properly dx years ago, and gone gluten free- its quite possible the Grave's may have not had a chance to start up. :(

good luck!!! and good luck with the iron. it can take some time to heal the gut after going gluten free... are you eating any iron rich foods too?

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Brigit Apprentice
Brigit
Posted
  • Author

Thanks for your mail. Jip I'm eating Iron rich food as much as I can stomach it. Wasn't a fan of liver or spinach before, but am now including them in my diet along with the other top 50 iron rich foods - I have a list in my kitchen ;)

I can't remember about my thyroid,it was 3.6 or 3.9 when I last had it checked, the first time they put me on iron supplements. The most recent visit to the doctor with me describing my 'problems' and him discovering that my iron count was lower than what it was before the supplements, didn't change their mind though. They simply told me to continue on supplements and when I asked about my thyroid, he said it wouldn't be that, as I'd managed to lose weight over the last couple of months.

I think it'd be a good idea to look into it further. Once we've managed to save up some more cash for doctors visits, we are going to get more advice. The last month or so has been a ridiculous amount of tests, drips and a big waste of cash.

Much strength and grace to you to!

mushroom Proficient
mushroom
Posted

Is Vit D3 easy to find, I was in my chemist today. And didn't see much Vit D supplements.

Probably best to go to a vitamin shop or a health food store and get a good high potency one.

thleensd Enthusiast
thleensd
Posted

I had many similar issues... tingly fingers, dizzy... the only two items I tested low for was iron and D. Doc put me on a D prescription for 6 weeks and it helped... it's very possible for your body to be low in some vit/minerals but not test low.

You'll see it's very common for us to be low in iron, b-12, d, calcium/magnesium.

If your body is malnourished, lots of things can go wrong.

My iron shot WAY up when I went gluten-free. Doc didn't believe it. It's still low, but it's low in normal range.

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