Jump to content

  • 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):

Symptoms

draeko

By draeko
in Coping with Celiac Disease

Recommended Posts

draeko Apprentice
draeko
Posted

Good morning everyone,

Just diagnosed a few weeks ago and I am still dealing with lots of symptoms. I have a few weird ones and was wondering if someone else experienced them.

Really warm face and some flushing

numbness in legs and arms

pressure in my head that it makes it difficult to walk

Just need some reassurance this is all do to Celiac. My doctor assures me it is. ?? Im a little concerned.

Melanie :(

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted
Good morning everyone,

Just diagnosed a few weeks ago and I am still dealing with lots of symptoms. I have a few weird ones and was wondering if someone else experienced them.

Really warm face and some flushing

numbness in legs and arms

pressure in my head that it makes it difficult to walk

Just need some reassurance this is all do to Celiac. My doctor assures me it is. ?? Im a little concerned.

Melanie :(

Hi Melanie :)

Try not to worry--I had those symptoms, too. It takes time for those sort of things to go away--probably several months.

Guest Norah022
Guest Norah022
Posted

I have been gluten free since June and am still having those symptoms so it is going to be a long haul for a while but hopefully it will get better for the both of us!

draeko Apprentice
draeko
Posted
  • Author
I have been gluten free since June and am still having those symptoms so it is going to be a long haul for a while but hopefully it will get better for the both of us!

Really :o Have you seen any improvement? Please tell me yes...I've been living like this for 7 years now full of wicked symptoms but I wish they could go away overnight...sorry to vent..Im sure you feel the same way..

Thanks for you reply

Melanie

sagemoon Newbie
sagemoon
Posted

I have had all sorts of wierd symptoms as well, including a hot face, and just realized yesterday that a few more have gone to the wayside. I have been gluten free since January 2006, but have still been getting some hidden gluten as evidenced by a positve IgA a month ago, but it is a lot better than it was. One of my symptoms was the inability to have a proper conversation on any given day - I just could not remember the name of anything! It was so frustrating. I'd wind up pointing to the object that I could not name - say the kitchen countertop - and getting so mad at the person I was talking to because they could not get what I was trying to say. Sheesh!!! Anyway, I realized yesterday that I have been having perfectly clear conversations for a while. YeeHaa!! This healing may also have been helped by all of the logic puzzles I have been forcing myself to do daily. They really are hateful things and very difficult for me to do, I guess it is because I am an artist and don't think particularly logically, but I have improved on my success rate from 1 out of 5 right to 3 out of 5 right. (I am bored with the Sudoku and regular crosswords)

The second healing I have noticed is that I do not want to take my Ritalin anymore. I was diagnosed about 6 years ago with Adult ADD. The Ritalin really helped when I needed to pay particular attention. I had a lot of business meetings to attend and would find mindself drifting off and unable to follow the conversation. I was getting lost a lot when I was driving. I also tried to burn down the house a couple of times by boiling the pan dry. I hadn't taken it very much over the past 6 months because I have been hoping the gluten was the culprit and was holding out for my brain to settle down after going gluten free, but the thought of never getting a refill again was really scary. I realized just over the past few days that I don't care about it anymore, at all. I haven't had any since I don't know when and feel perfectly capable of handling life without it. Both of these improvements are huge events as far as I am concerned.

I still get a hot face now and then, but it is rarer and rarer. It does take a while for things to settle down after going gluten free. Hang in there and look forward to happy days when you, too, realize that something good has happened. :)

Guest Norah022
Guest Norah022
Posted
Really :o Have you seen any improvement? Please tell me yes...I've been living like this for 7 years now full of wicked symptoms but I wish they could go away overnight...sorry to vent..Im sure you feel the same way..

Thanks for you reply

Melanie

Actually it has gotten much much worse but that could just be my body so it doesn't mean it will be the case with you. Everything that is suppossed to happen when you go gluten free has not happened with me so I don't really know how to explain that.

sagemoon Newbie
sagemoon
Posted
Actually it has gotten much much worse but that could just be my body so it doesn't mean it will be the case with you. Everything that is suppossed to happen when you go gluten free has not happened with me so I don't really know how to explain that.

Hey Nora,

Actually, I felt a lot better after going gluten-free for the first month, but just the stomach stuff. Then I got really sick for about a month, all of my previous symptoms were back with a vengeance. I figured out that it was SIBO (Small Intestinal Bacterial Overgrowth). I think it happened because I had lost a lot of my fiber in the Gluten-free process. You can get it treated with antibitotics, but I found a diet online (sorry, can't remember where I found it, google SIBO) that worked well. Basically, it is the Atkins diet except you eat fresh fruit as well. It is meant to eliminate any refined carbs and sugars to deprive the wrong bacteria from growing in your gut and the high fat portion makes everything slip through your gut at a higher rate. I did it for 2 weeks and felt really good afterwards. It then took me about 2 months before I noticed the fatigue and arthritis symptoms to have really subsided. Just hang in there and research everything that happens to you. I wouldn't have known about the SIBO except I searched the internet with the question as to why I was still sick if I had gone gluten-free. I forget the exact search phrase I used, but it was pretty close to just WHY AM I STILL SICK?!? My gastro guy and my Family MD had no idea. You have to pursue this and not give up.

Hope this helps and that you feel better soon, :rolleyes:

Oh yeah, DEFINITELY take probiotics. They will help immensely. I can point you in the right direction on those if you need help.

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

Celiac.com Sponsor (A8-M):


Guest Norah022
Guest Norah022
Posted

Actually the stomach problems are all gone.

I am having issues with serious vertigo and lightheadedness, passed out a few times. Having serious breathing issues that no one can figure out.

I was doing really well for the first three months then went back to school and got immensely ill with the above symptoms.

Sophiekins Rookie
Sophiekins
Posted

Hey Nora,

Try cutting corn out of your diet - it causes me to feel constantly dizzy with episodes of vertigo so severe that I have to stay completely motionless until they stop of their own accord. It also causes breathing problems (let me guess. . .your lung capacity is way down, but it isn't pneumonia, and your doc would be thinking you had asthma, except that none of the asthma drugs do anything at all and all of the tests come back negative?). I had to change jobs because of this - my workplace had a popcorn machine that was used occasionally, but which was enough to cause the breathing problems. I also have to limit the time I spend in movie theatres and malls with popcorn stands.

num1habsfan Rising Star
num1habsfan
Posted

I still get tingles and numbness, mostly in my wrists or hands and sometimes my feet. I've been gluten-free for almost 4 years and still those show up randomly. Hopefully you wont have this issue..

~ lisa ~

Guest Norah022
Guest Norah022
Posted
Hey Nora,

Try cutting corn out of your diet - it causes me to feel constantly dizzy with episodes of vertigo so severe that I have to stay completely motionless until they stop of their own accord. It also causes breathing problems (let me guess. . .your lung capacity is way down, but it isn't pneumonia, and your doc would be thinking you had asthma, except that none of the asthma drugs do anything at all and all of the tests come back negative?). I had to change jobs because of this - my workplace had a popcorn machine that was used occasionally, but which was enough to cause the breathing problems. I also have to limit the time I spend in movie theatres and malls with popcorn stands.

Actually my lung capacity is normal.....

And the vertigo is continuous..IT never stops.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

      @glucel, There's a strong correlation between thiamine deficiency, hypoxia, and insomnia. Thiamine is needed to help red blood cells carry oxygen. In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular...
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

      Thanks. Not a big thing, particularly because most likely it is "true" but not yet demonstrated.
    3. glucel
      - glucel replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

      Thanks for the thoughtful comment. You are right that the study’s main conclusion was cautious: the researchers found that inherited antibody-gene variants significantly shape the naïve B-cell receptor repertoire, including usage of some gene segments involved in celiac-related antibody responses, but they did not find strong evidence that polymorphisms in...
    5. knitty kitty
      - knitty kitty replied to Bogger's topic in Related Issues & Disorders
      6

      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

      I have osteoporosis and have crushed three vertebrae. I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health). I tried Fosomax, but it tore up my insides. I prefer the supplements. I feel better and my bones feel stronger. References...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,003
    • Most Online (within 30 mins)
      10,442
    michelinagiggles
    Newest Member
    michelinagiggles
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      iron digestibility

      By knitty kitty · Posted

      @glucel,  There's a strong correlation between thiamine deficiency, hypoxia, and insomnia.  Thiamine is needed to help red blood cells carry oxygen.  In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular events.  Curiously, thiamine deficiency is correlated with excessive daytime sleepiness and oversleeping.   I found a combination of Tryptophan, Pyridoxine B 6, magnesium, and L-theanine works very well for inducing sleep.  Sometimes, I add Passion Flower Extract and/or Sweet Melissa.  There's no side effects the next morning with Passion Flower, it just induces sleepiness.  Sweet Melissa is groovy, and has anti-inflammatory effects on the digestive system.   I prefer to take 250 mg Benfotiamine and 100 mg Thiamine TTFD in the mornings and another dose of Benfotiamine at lunch.  I try not to take any thiamine after four p.m. because it keeps my brain so energized and wanting to think... Oh, I do take a combination of another form of thiamine (sulbutiamine), Pyridoxine and Cobalamine for a pain reliever sometimes, but I can sleep after taking that.  But thiamine does help regulate circadian rhythm.   Make sure you're getting Omega Three fats! They'll help you satisfy that late night carb craving with fewer carbs.  Flaxseed oil, olive oil, sunflower seed oil.  Nuts and nut butters, like walnuts and cashews, are good, too, if you can tolerate them.    Try taking the 100mg thiamine HCl before your aerobics and see if there's a difference.  Sweet dreams! References: Network Pharmacology Analysis of the Potential Pharmacological Mechanism of a Sleep Cocktail. ......(Skip to Section Four) https://pmc.ncbi.nlm.nih.gov/articles/PMC11201840/ Effects of Melissa officinalis Phytosome on Sleep Quality: Results of a Prospective, Double-Blind, Placebo-Controlled, and Cross-Over Study https://pubmed.ncbi.nlm.nih.gov/39683592/
    • glucel
      iron digestibility

      By glucel · Posted

      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
    • knitty kitty
      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

      By knitty kitty · Posted

      I have osteoporosis and have crushed three vertebrae.  I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health).   I tried Fosomax, but it tore up my insides.  I prefer the supplements.  I feel better and my bones feel stronger.   References: A composite protein enriched with threonine, lysine, and tryptophan improves osteoporosis by modulating the composition and metabolism of the gut microbiota https://pubmed.ncbi.nlm.nih.gov/41915427/
    • knitty kitty
      Coeliac And Cardio Vascular Disease

      By knitty kitty · Posted

      @Aileen Cregan, I was put on high blood pressure medication, too. But I was able to correct my high blood pressure by supplementing with Thiamine Vitamin B 1.  I am no longer on high blood pressure medication.  I feel much better without the medication. I continue to supplement Thiamine in the form Benfotiamine.   The particular high blood pressure medication I took was Norvasc (amlodipine), which causes thiamine deficiency by blocking thiamine transporters so that thiamine cannot enter cells.  Benfotiamine can get into cells by merging with the cell membrane, thus bypassing nonfunctional thiamine transporters.   Indapamide also blocks thiamine transporters! The use of this type of medications that block thiamine precipitated Wernickes Encephalopathy.  My doctors did not recognize the connection to Thiamine deficiency.  I nearly died.   Talk to your doctor and dietician about supplementing with Benfotiamine, a fat soluble form of thiamine that bypasses thiamine transporters.  Ask for an Erythrocyte Transketolace Activity Assay to check your thiamine levels asap.  Routine blood tests for thiamine are not an accurate measure of  thiamine in the body.   Absorption of essential vitamins like Thiamine is altered in Celiac Disease due to damaged villi, inflammation and dysbiosis.  The Gluten Free diet can be lacking in vitamins and minerals.  Discuss supplementing with all the eight B vitamins,  the four fat soluble vitamins and necessary minerals. Please keep us posted on your progress! References: Drug-nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3) https://pubmed.ncbi.nlm.nih.gov/31764942/ The Pivotal Role of Thiamine Supplementation in Counteracting Cardiometabolic Dysfunctions Associated with Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      Hi, @Sue7171, I thought you might be interested in this article about Lyme disease and the discussion after the article.   I found this article enlightening.  The finding that not only can alpha gal be problematic, but advantageous infection with Staph aureus can be problematic.   The Acari Hypothesis, VII: accounting for the comorbidity of allergy with other contemporary medical conditions, especially metabolic syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11983536/  
×
×
  • Create New...