Jump to content

  • 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

Please Help! Confused About My Symptoms!

hollz20

Recommended Posts

hollz20 Newbie
hollz20
Posted

Hi, im new to this and wondered if anyone could help me please!

a couple of weeks ago i had a blood test for celiac, because i have been feeling awful for months now, i have been feeling really depressed, tired all the time, been having troubles breathing after eating bread, and wheat containing food, also been having troubles sleeping,numbness in the hands and toes, and my biggest problem is my eyes! they look dreadful i have big black swollen puffy eyes so i had my test and it come back negative, however the doctor said it isnt a very accurate test, so he suggested going gluten-free, ive been on gluten free diet for 2 weeks now, and am feeling a little better, however i am still not right, i wondered how long it will take to be completly gluten free as my eyes are still quite puffy and my hair feels horrible and seems to be getting thin,

would be gratefull if anyone could give me some advise! thankyou!

Hollyxx :)

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

Celiac.com Sponsor (A8-M):


RiceGuy Collaborator
RiceGuy
Posted

First, be grateful that you caught it as soon as you have. Many do not.

For the numbness and such, I'd recommend magnesium, and also a sublingual methylcobalamin (B12) supplement. There are likely other deficiencies, such as iron, calcium, Vitamin D, zinc, etc. B vitamins in general seem to be helpful to many on this board too.

Do be sure to check for gluten-free statements on the labels of all supplements, and check your skin and hair care products for gluten containing ingredients as well. For example, stuff from wheat and barely are common items in shampoo.

Hope you feel better soon!

Welcome to the board!

skinnyasparagus Apprentice
skinnyasparagus
Posted
Hi, im new to this and wondered if anyone could help me please!

a couple of weeks ago i had a blood test for celiac, because i have been feeling awful for months now, i have been feeling really depressed, tired all the time, been having troubles breathing after eating bread, and wheat containing food, also been having troubles sleeping,numbness in the hands and toes, and my biggest problem is my eyes! they look dreadful i have big black swollen puffy eyes so i had my test and it come back negative, however the doctor said it isnt a very accurate test, so he suggested going gluten-free, ive been on gluten free diet for 2 weeks now, and am feeling a little better, however i am still not right, i wondered how long it will take to be completly gluten free as my eyes are still quite puffy and my hair feels horrible and seems to be getting thin,

would be gratefull if anyone could give me some advise! thankyou!

Hollyxx :)

I, too, felt the same way as you did prior to becoming gluten free. I was crying every day and almost diagnosed with depression and perscribed a pill - but I rejected it because I didn't find it necessary. I sleep a lot better now and overall emotionally feel that I can tolerate things more. I know what you mean about your eyes too; today I actually thought they looked less puffy than they have in the past so many years! My hair falls out a lot but I suspect it to be at the fault of dying my hair. Then again, I may even be wrong on that.

My only withstanding issue is my weight loss. I can't seem to put on weight even though I get ravenously hungry and eat a lot. I'm always munching on things like apples, almonds, and rice crackers. Anyone have any suggestions for that? I don't really eat meat either so that may be part of it. The other symptom is getting dizzy but I think that's because I'm at such a low weight. To me it seems odd because I noticed on the forums that people experience the opposite effect..

RiceGuy Collaborator
RiceGuy
Posted
I, too, felt the same way as you did prior to becoming gluten free. I was crying every day and almost diagnosed with depression and perscribed a pill - but I rejected it because I didn't find it necessary. I sleep a lot better now and overall emotionally feel that I can tolerate things more. I know what you mean about your eyes too; today I actually thought they looked less puffy than they have in the past so many years! My hair falls out a lot but I suspect it to be at the fault of dying my hair. Then again, I may even be wrong on that.

My only withstanding issue is my weight loss. I can't seem to put on weight even though I get ravenously hungry and eat a lot. I'm always munching on things like apples, almonds, and rice crackers. Anyone have any suggestions for that? I don't really eat meat either so that may be part of it. The other symptom is getting dizzy but I think that's because I'm at such a low weight. To me it seems odd because I noticed on the forums that people experience the opposite effect..

Are you taking any supplements? I was also eating enormous quantities of food for awhile, but after taking the supplements I mentioned in my previous post, this has subsided greatly. B12 is also known to be very important for healthy hair, nails, and skin.

skinnyasparagus Apprentice
skinnyasparagus
Posted
Are you taking any supplements? I was also eating enormous quantities of food for awhile, but after taking the supplements I mentioned in my previous post, this has subsided greatly. B12 is also known to be very important for healthy hair, nails, and skin.

I take a multi-vitamin which has B12 in it. I don't want to take any extra unnecessary pills. Do enzyme pills count?

I take them every time I eat, according to what the bottle says to help digestion. You can't get addicted to them could you? :blink:

RiceGuy Collaborator
RiceGuy
Posted

No, you can't get addicted to digestive enzyme supplements, nor vitamin or mineral supplements. Check what kind of B12 is in the multi you take. Chances are, it will be cyanocobalamin, which is actually made by attaching a molecule of cyanide to the vitamin B12. I'd recommend only the methylcobalamin type, as it doesn't require the conversion by the liver, or any digestive process to be absorbed and put into use.

I will suggest magnesium too, since that mineral seems to be deficient in many of us. Try those for a week or two, and see how you feel.

Gwen B Rookie
Gwen B
Posted
Hi, im new to this and wondered if anyone could help me please!

a couple of weeks ago i had a blood test for celiac, because i have been feeling awful for months now, i have been feeling really depressed, tired all the time, been having troubles breathing after eating bread, and wheat containing food, also been having troubles sleeping,numbness in the hands and toes, and my biggest problem is my eyes! they look dreadful i have big black swollen puffy eyes so i had my test and it come back negative, however the doctor said it isnt a very accurate test, so he suggested going gluten-free, ive been on gluten free diet for 2 weeks now, and am feeling a little better, however i am still not right, i wondered how long it will take to be completly gluten free as my eyes are still quite puffy and my hair feels horrible and seems to be getting thin,

would be gratefull if anyone could give me some advise! thankyou!

Hollyxx :)

Did you get bloodwork done? That would tell you what your vitamin levels are, maybe anemic? But you should definately get your thyroid checked out. Many celiacs have trouble with over or under active thyroid which also causes puffy eyes, depression, fatigue, wieght loss or gain etc. Look up thyroid and check your symptoms and ask your Dr. A simple bood test would show your TSH level and is a reasonable indication of thyroid problems.

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

Celiac.com Sponsor (A8-M):


skinnyasparagus Apprentice
skinnyasparagus
Posted
No, you can't get addicted to digestive enzyme supplements, nor vitamin or mineral supplements. Check what kind of B12 is in the multi you take. Chances are, it will be cyanocobalamin, which is actually made by attaching a molecule of cyanide to the vitamin B12. I'd recommend only the methylcobalamin type, as it doesn't require the conversion by the liver, or any digestive process to be absorbed and put into use.

I will suggest magnesium too, since that mineral seems to be deficient in many of us. Try those for a week or two, and see how you feel.

Ah, you, sir, are indeed correct. It is cyanocobalamin and there isn't magnesium in my multi either. I dipped a little into it as well and that actually might help my hypertension. Thank you very much! I'll look into another multi and find a magnesium supplement next chance I get.

Lisa Mentor
Lisa
Posted

Holly,

Continue what you are doing and try to be totally gluten free. Remember to check you shampoos, meds, lotions and tooth paste, etc.. Two weeks is still a relatively a short time. It can take up to several years to get back to that 100% that you remember. Stick to the diet and keep learning here. ;)

I don't think any cleansing will help you at this time and in fact some that I have heard about can be dangerous.

Archived

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

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


  • Member Statistics

    • Total Members
      132,034
    • Most Online (within 30 mins)
      7,748
    CE1963
    Newest Member
    CE1963
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Scott Adams · Posted

      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      Fighting for a name

      By Scott Adams · Posted

      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Celiac getting dentures

      By NanCel · Posted

      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.