Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,349
    • Most Online (within 30 mins)
      7,748
    Bradballentinenc
    Newest Member
    Bradballentinenc
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Confused About Results

      By knitty kitty · Posted

      @Ginger38, Diabetes and Celiac often go hand in hand.  Having more than one autoimmune disease is common with Celiac.  I'd err on the side of caution and go gluten free.   I did not want to go on insulin, either.  I got my diabetes under control by following the low histamine version of the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  My diet now does include carbs.   We're supporting you through this difficult time.  
    • knitty kitty
      This Roller Coaster Ride Needs to Stop

      By knitty kitty · Posted

      @Ginger38,  I've been there with horrible symptoms and diarrhea accidents and diabetes and the insulin conundrum!  My doctors were just as frustrating!   I had nutritional deficiencies.  I know your doctors refuse to test for this.  So did mine, saying "I can't make money prescribing vitamins."  Some members say a naturopathic doctor is more open to testing for deficiencies.  Remember not to start supplementing until after testing is done.  Otherwise the supplements will raise your blood levels falsely.   I had studied Nutrition at university, so I decided to supplement essential vitamins and minerals.  A B Complex, extra Thiamine (Benfotiamine) for the diabetes, magnesium and Vitamin D are the supplements I started with.   The B vitamins are water soluble so any excess is excreted easily.  Thiamine even in high doses is safe and nontoxic.  Diabetics lose more thiamine in urine because of weird kidney stuff.   I wanted to get my blood glucose levels under control because gluten free foods made my level spike for long periods, too.  I absolutely did not want to go on insulin.  Once you do, the pancreas stops making it.  Very scary.  Best to help the pancreas function with thiamine in the form Benfotiamine. I began the low histamine version of the Autoimmune Protocol Diet (developed by Dr. Sarah Ballantyne, A Celiac herself).  It's a low carb, very strict diet at first, then expanded.  I considered it similar to feeding a sick baby.  You don't give hard to digest foods to a baby.  You give easily digestible foods.  This allows time for the gastrointestinal tract to calm down and heal.  Symptoms started to calm down quickly.  With the vitamins, I started feeling much better.  My blood glucose levels stabilized.  I did not go on insulin.  I do not take anti-glycemic pharmaceutical drugs like Metformin.  Just diet.  You're making the right decision to live as a Celiac.  Your body is telling you clearly.  You can get through this.  You're strong and you're fighting for yourself and your baby.  Good job!  You have the Tribe behind you!
    • maryannlove
      nuts.com -- no longer Celiac safe?

      By maryannlove · Posted

      Though trying to diligently eat gluten free, recent bloodwork was bad so searching for culprits.  Eat lot of (preferably mixed) nuts.  Most allergen labels say may be processed on equpment that also processes wheat, etc.  Finally found ONE kind (unsalted mixed) at BJ's.  Wessley (their store brand) that did not contain that warning.  Says in large letters "A GLUTEN FREE FOOD."  Well, all nuts are a gluten free FOOD!  Have been eating and now wonder if this is intentionally decieving.  So stopped eating until find culprit.  Nuts are so good for protein and fiber (especially if trying to not eat meat).  'Tis so frustrating.  Thanks to above, I'll look into Tierra Farms.   
    • somethinglikeolivia
      Am I celiac or not?

      By somethinglikeolivia · Posted

      Fascinating! This was very helpful, thanks for sharing
    • maryannlove
      Yasso frozen yogurt bars - be careful

      By maryannlove · Posted

      Despite being very diligent about eating gluten free, my recent bloodwork was bad.  So been on a mission to find the culprit(s).  During Covid my daughter found "certified gluten free" Yasso mint chocolate chip yogurt bars at Costco.  I was elated and have been eating them since.  When delving into possible culprits I discovered that the boxes with 12 bars at both Costco and BJ's no longer say "certified gluten free."  But the boxes with 4 bars at groceries and Target still say "certified gluten free."  Contacted the manufacturer and was told to go by what the box says.  So guess different machinery is used.  Was also told they were in the process of changing boxes.  Will be interesting to see what that brings.  
×
×
  • Create New...