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 Celiac.com!
    eNewsletter
    Donate

What Are Your Symptoms Like?

Igg postive

Recommended Posts

Igg postive Rookie
Igg postive
Posted

Tell me what your symptoms are like. Everyone with Celiac, Coeliac or Gluten Intolerance has different symptoms. I would be very interested to hear what your symptoms are.

My symptoms are bloating, stomach pain, at times very painful where my small intestines are. I have had a sack of fluid near where my gallbladder use to be (It is gone now). I could feel it when I laid on my stomach. My joints have been painful, use to think it was because of my hypothyroidism - but from reading this could also be Celiac. I have mostly constipation with some diarrhea. I have been previously diagnosed with IBS, lactose intolerance and pre-diabetes. Many times I felt like I was falling apart.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Igg postive Rookie
Igg postive
  • Author
Posted

I hope no one takes this as noisey. I would like to understand what sort of symptoms others are suffering with. This information will be also others that are new to the web site trying to decide if they might have Celiac/Gluten Intolerance.

Link to comment
Share on other sites
Lisa Mentor
Lisa
Posted

Hold tight, Igg...weekends are very slow here.

Take a walk around this site. It's full of information.

Link to comment
Share on other sites
thegreatkatsby Newbie
thegreatkatsby
Posted

I can tell you my diagnosis came as a surprise, because one of my closest friends is gluten intolerant and my symptoms have been so different!

The manifestation that resulted in diagnosis was an extremely heightened sense of smell. It was so extreme that I could smell things that no one should have to smell (I'll leave it at that), as well as grossly exaggerated other smells (perfumes, body odor, chemicals, etc). I figured it had something to do with my migraines, but couldn't figure out why everything was getting so bad. My PCP was perplexed, and sent me to a neurologist who suggested testing for gluten sensitivity. You can imagine my surprise when she told me that my blood test results were the highest ones she had ever seen as a doctor!

[symptoms/etc I believe are tied to my experience with celiac include:]

fatigue

insomnia

trouble getting up in the morning

foggy brain

anxiety

mood swings (anger, depression, and other irrational fun times)

anemia (which might be related to trouble getting up in the morning)

low vitamin D

HEADACHES (daily headaches and migraines)

neurological symptoms including: visual disturbances, light sensitivity, noise sensitivity, smell sensitivity, touch sensitivity

stiff neck and shoulders

gallbladder attacks (not confirmed, but I'm pretty confident that's what they were)

pain in lower legs (orthopedic could NOT figure out why I was in so much pain when I exercised... nothing showed up on x-rays or bone scan or during physical)

dry skin (including a lovely flaky scalp)

alcohol intolerance

attention deficit disorder

eczema

bloating

abdominal pain

gurgling stomach

diarrhea

[symptoms/etc that *might* be related to celiac:]

heat/exercise intolerance (I think this is a histamine problem that I haven't figured out yet--on zyrtec daily to deal with it)

I'm sure I'm forgetting plenty of things... but these are the ones I could think of right now. The neurological problems were so bad that they greatly outweighed the gastro symptoms... to the point that I didn't think I had any gastro symptoms. As I have now been without a major headache since the diagnosis and subsequent switch to a gluten-free diet, I have begun to really notice how many awful things are happening inside of me. I also now acknowledge that the things I chalked up to "food poisoning", "too tired", "physiological manifestation of stress", "didn't settle right", etc, were more likely celiac symptoms and not the hundreds of excuses I made up to try to explain to myself what was happening to me.

I'm still waiting for my sense of smell to back off... it has a little bit, but I'm still annoyed by it. Time will tell.

Link to comment
Share on other sites
scottyg354 Enthusiast
scottyg354
Posted

I'm not exactly diagnosed and I'm back on gluten until the end of the month getting a colonoscopy (not for Celiac Testing) and testing done to test for intolerances and malabsorption.) Symptoms I'm having been dealing with for a long time are:

GI Symptoms (Had them for about 7 years!)

Diarrhea-Constipation-Flat/Ribbony Stools (Sometimes my stools are normal)

Mild Stomach Pain (mainly on left side)

Burning/Nausea Sensation (Hard to explain, I never vomit)

Noises all over the place (throat, stomach, lower back)

Foul Gas (Not all the time but a good 3-4 days a week)

Orange and Yellow Stools

Burping

Heartburn

Other symptoms

Anxiety/Mild Depression

Night time body tremors

Mild Night Sweats

Dry Knuckles, Feet and Elbows

Skin Boils

Constant Sinus/Nasal Issues

Heart Palps

High Blood Pressure

Elevated TSH Levels (8.5 - Hypothyroid)

Fatigue

Loss of Appetite/Increase in Appetite (Alternates)

Frequent Urination

I'm not sure if I have Celiac or not, but my doc agrees with me that it could be within the realm of possibility. He was originally pushing IBS-A on me, until i told him about my stool being different colors and my gas sometimes being awfully retched (like dead animal retched), the we decided to dig deeper.

Link to comment
Share on other sites
Marie1976 Enthusiast
Marie1976
Posted

The manifestation that resulted in diagnosis was an extremely heightened sense of smell. It was so extreme that I could smell things that no one should have to smell (I'll leave it at that), as well as grossly exaggerated other smells (perfumes, body odor, chemicals, etc). I figured it had something to do with my migraines, but couldn't figure out why everything was getting so bad. My PCP was perplexed, and sent me to a neurologist who suggested testing for gluten sensitivity. You can imagine my surprise when she told me that my blood test results were the highest ones she had ever seen as a doctor!

I have a heightened sense of smell too, I always thought it was because I'm hearing impaired (I've heard people who lose one sense have other senses heightened to make up for it). Is heightened sense of smell a common symptom of celiac disease?

I have not been officially diagnosed (blood tests only; waiting for endoscopy). I've been attributing all of my symptoms to other disorders: headaches (TMJ?), diarrhea (IBS?), fatigue (anemia?), mood swings and anxiety (PMS?) but if they are all related to celiac, it would be nice if they all go away when I eliminate gluten! But maybe I'm getting my hopes up too soon.

Link to comment
Share on other sites
shopgirl Contributor
shopgirl
Posted

Eep. Well, I'm only five months out so it's difficult to say exactly what ALL my symptoms are but generally: anxiety (generalized with panic attacks), depression, extreme stress, constipation, bloating, migraines, hormonal issues, acid reflux, insomnia, exhaustion, weight gain (60 pounds), keratosis pilaris, seborrhea on scalp, mild eczema, hair loss.

Honestly, I'm sure there's more but those are the biggies. There might have been others that I just didn't notice because of the magnitude of some of the other symptoms. And there's probably yet more that haven't resolved themselves yet so it's tough to evaluate them. Safe to say I was all over the map as most of the people here.

(And, hey, I just realized today is my five month anniversary. I'll have to celebrate with a gluten-free something or other.)

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nuttmegs17 Apprentice
nuttmegs17
Posted

I hope no one takes this as noisey. I would like to understand what sort of symptoms others are suffering with. This information will be also others that are new to the web site trying to decide if they might have Celiac/Gluten Intolerance.

Currently at the end of my rope. In the throws of trying to get it all sorted out. Cannot get into see a GI doc until the end of the month

Early - stomach issues

Gas/Cramps/Bloating (to where I looked preggers)

Constipation

Weight Stagnation (I'm athletic and my body no longer repsonded when I took up training which was unusual)

Intense Night Sweats

Chills during the day

Later all the above BUT everything magnified

Started swelling in my arms shoulders back after eating ANYTHING - could never pinpoint what it was

super cold hands and feet

New: Facial swelling in my cheeks and around my eyes

I went gluten-free to see if it would help and also cut out lactose and soy and say decreased bloating

Went back on Gluten so I could see the GI doc and have the tests (if it's not celiac, then I want to know what the heck is going on!)

Felt odd b/c besides a small increase in gas bloating, didn't see much HOWEVER

yesterday I noticed my lips are swelling and I feel extremely foggy this morning. also have been getting the chills and hot flashes through out the day. I feel like I'm crazy.

Called my GI guy to see if there were any cancellations...want to get in ASAP!

ANyone - can't my reg doc just order a test to test for antibodies? Why do I have to wait?!

Link to comment
Share on other sites
nuttmegs17 Apprentice
nuttmegs17
Posted

Also, floating stool (so if TMI) sometimes oiley

Link to comment
Share on other sites
Igg postive Rookie
Igg postive
  • Author
Posted

I chalked up to "food poisoning"

thegreatkatsby I had the same thoughts for years before I had my gallbladder out. I thought I had eat bad food. Then that distress was happening every day and I had a HIDA test which showed my gallbladder was functioning less than 10%. Once my gallbladder was out my surgeon said my gallbladder was really diseased for a long time.

Thanks to the insights to your symptoms. I can tell you have been thought a lot.

Link to comment
Share on other sites
Igg postive Rookie
Igg postive
  • Author
Posted

exhaustion, weight gain (60 pounds), keratosis pilaris, seborrhea on scalp, mild eczema, hair loss.

Shopgirl,- The exhaustion is debilitating. I contributed my exhaustion to my hypothyroidism but I wondering if it is really GD too. My weight gain is baffling too. Could it be I am not absorbing the food/vitamins correctly? My appetite is always great. Maybe it

Link to comment
Share on other sites
shopgirl Contributor
shopgirl
Posted

Shopgirl,- The exhaustion is debilitating. I contributed my exhaustion to my hypothyroidism but I wondering if it is really GD too. My weight gain is baffling too. Could it be I am not absorbing the food/vitamins correctly? My appetite is always great. Maybe it

Link to comment
Share on other sites
Igg postive Rookie
Igg postive
  • Author
Posted

Currently at the end of my rope. In the throws of trying to get it all sorted out. Cannot get into see a GI doc until the end of the month...

Called my GI guy to see if there were any cancellations...want to get in ASAP!

ANyone - can't my reg doc just order a test to test for antibodies? Why do I have to wait?!

I can really emphasize with you about the waiting. When I realized it might be the gluten making me sick it was hard to keep eating it (so I can have the biopsy). The waiting has been hard. Many times I have questioned whether I should really wait or go on the gluten-free diet and maybe feel better. The only thing is I remembered one of the members saying that later I would be happier to know for sure what was happening with the biopsy results. Hope the wait will be worth it.

Do you have access to a good regular MD? You might look up a good GD doctor in your area. The blood test could be ordered by a MD

Link to comment
Share on other sites
Igg postive Rookie
Igg postive
  • Author
Posted

Scottyg354- It

Link to comment
Share on other sites
scottyg354 Enthusiast
scottyg354
Posted

Scottyg354- It’s a wonder that your doctor does not give you the Celiac blood test panel? If it came back positive they could do the endoscopy at the same time they do the colonoscopy. That would save you a lot of money.

I can commiserate with you on the burping. I have too much gas in my stomach that it pushes up against my hiatal hernia. Ouch that is pain. My doctor gave me some medicine to open up my hiatal hernia so I can belch.

Let us know what they find.

I don't know why either. I'm just going with whatever he wants right now. He's a decent doctor, hears me out and doesn't blow me off like i'm nuts so thats a good thing in itself. He wants to make sure everything in my colon is alright then he is going to have me tested for other stuff. Was concerned about the color of my bm's and the smell.

Also, as for the hiatal, I have one too many and it causes me some grief. Not to bad though, occasional GERD flare up maybe some chest tightness but thats it, doesn't really trap gas. If i get trapped gas its usually on my lower end.

Link to comment
Share on other sites
Emma-Lee Rookie
Emma-Lee
Posted

I get really bad painful stomach pains. I almost have to crawl into a ball and it gets so bad that I cry. It is gas. This has been so terrible and has even led to several emergency visits where they could not find anything wrong (before I was diagnosed of course). I also had constipation, not diarrhea- which made me think I could not possibly have Celiac. However, I learned this is NOT true that symptoms can really very. Also joint pain, tingling finders and toes. Sharp cramps in my calves- mostly at night. Sleepiness! Like I could sleep 10 hours easy....and want more....Also a low libido and moodiness. I am SO darn glad that my doctor found me to have Celiac because it is treatable and now that I am on my new gluten free diet I feel a lot better. I accidentally got gluten yesterday- and it was back to the painful gas...but it is a learning process.... I hope this helps

Link to comment
Share on other sites
Igg postive Rookie
Igg postive
  • Author
Posted

I get really bad painful stomach pains.

Emma-Lee, - It does help to know you have similar symptoms. Thank you! I have been suffering from the stomach pains for a while too. Just could not put a finger on what was causing them. Thank goodness my endo figured it out. Hopefully when I start my diet I will get relief too. It is nice to know I might have an end to this symptom.

Link to comment
Share on other sites
scottyg354 Enthusiast
scottyg354
Posted

Emma-Lee, - It does help to know you have similar symptoms. Thank you! I have been suffering from the stomach pains for a while too. Just could not put a finger on what was causing them. Thank goodness my endo figured it out. Hopefully when I start my diet I will get relief too. It is nice to know I might have an end to this symptom.

I never get severe stomach pains. Well except for tonight, but apparently milk caused that. I usually got odd stomach pains that are hard to explain.

Link to comment
Share on other sites
thegreatkatsby Newbie
thegreatkatsby
Posted

I have a heightened sense of smell too, I always thought it was because I'm hearing impaired (I've heard people who lose one sense have other senses heightened to make up for it). Is heightened sense of smell a common symptom of celiac disease?

I have not been officially diagnosed (blood tests only; waiting for endoscopy). I've been attributing all of my symptoms to other disorders: headaches (TMJ?), diarrhea (IBS?), fatigue (anemia?), mood swings and anxiety (PMS?) but if they are all related to celiac, it would be nice if they all go away when I eliminate gluten! But maybe I'm getting my hopes up too soon.

I think the heightened sense of smell is a symptom of, or a form of, a migraine. The worse my migraine symptoms get, the worse my sensitivity to everything gets... but I've dealt with the light/noise sensitivities for so long that I've adapted to dealing with them. Although I have an above-average sense of smell on a GOOD day... the extreme heightened sense of smell was something I typically only got in the days leading up to a migraine, or the days recovering from a migraine. Towards the end of 2010, the extreme heightened sense of smell never went away... and it was too hard to adapt. Everything made me feel sick and gave me a headache. I could smell everyone's breath, their shampoo, their feet, the detergent on their clothes... I could even tell when women were menstruating. It got to a point where I was in tears about it, so I called my PCP which led to eventual testing for and diagnosis of celiac by a neurologist who was looking for the migraine trigger (journaling hadn't revealed any clear patterns).

So, for me at least, the connection between celiac is there, albeit as a symptom/condition of a symptom/condition of the celiac reaction. Is there a name for that? Secondary symptom? It can be confusing.

The other thing I'm noticing now that I'm gluten-free is what I suspect are gallbladder problems. I always assumed my nausea was related to the headaches and migraine symptoms, but now that those have eased up, the stomach/abdominal problems are becoming more apparent. I recently posted in another topic about my hypothesis regarding a connection between a reaction to eggs and celiac (you can check it out here if you're interested).

As a side note--this may not be relevant but I think it's worth mentioning--my brother is hearing impaired. He had not been tested for gluten sensitivity.

Link to comment
Share on other sites
nuttmegs17 Apprentice
nuttmegs17
Posted

I can really emphasize with you about the waiting. When I realized it might be the gluten making me sick it was hard to keep eating it (so I can have the biopsy). The waiting has been hard. Many times I have questioned whether I should really wait or go on the gluten-free diet and maybe feel better. The only thing is I remembered one of the members saying that later I would be happier to know for sure what was happening with the biopsy results. Hope the wait will be worth it.

Do you have access to a good regular MD? You might look up a good GD doctor in your area. The blood test could be ordered by a MD

Link to comment
Share on other sites
NancyL Explorer
NancyL
Posted

I can tell you my diagnosis came as a surprise, because one of my closest friends is gluten intolerant and my symptoms have been so different!

The manifestation that resulted in diagnosis was an extremely heightened sense of smell. It was so extreme that I could smell things that no one should have to smell (I'll leave it at that), as well as grossly exaggerated other smells (perfumes, body odor, chemicals, etc). I figured it had something to do with my migraines, but couldn't figure out why everything was getting so bad. My PCP was perplexed, and sent me to a neurologist who suggested testing for gluten sensitivity. You can imagine my surprise when she told me that my blood test results were the highest ones she had ever seen as a doctor!

[symptoms/etc I believe are tied to my experience with celiac include:]

fatigue

insomnia

trouble getting up in the morning

foggy brain

anxiety

mood swings (anger, depression, and other irrational fun times)

anemia (which might be related to trouble getting up in the morning)

low vitamin D

HEADACHES (daily headaches and migraines)

neurological symptoms including: visual disturbances, light sensitivity, noise sensitivity, smell sensitivity, touch sensitivity

stiff neck and shoulders

gallbladder attacks (not confirmed, but I'm pretty confident that's what they were)

pain in lower legs (orthopedic could NOT figure out why I was in so much pain when I exercised... nothing showed up on x-rays or bone scan or during physical)

dry skin (including a lovely flaky scalp)

alcohol intolerance

attention deficit disorder

eczema

bloating

abdominal pain

gurgling stomach

diarrhea

[symptoms/etc that *might* be related to celiac:]

heat/exercise intolerance (I think this is a histamine problem that I haven't figured out yet--on zyrtec daily to deal with it)

I'm sure I'm forgetting plenty of things... but these are the ones I could think of right now. The neurological problems were so bad that they greatly outweighed the gastro symptoms... to the point that I didn't think I had any gastro symptoms. As I have now been without a major headache since the diagnosis and subsequent switch to a gluten-free diet, I have begun to really notice how many awful things are happening inside of me. I also now acknowledge that the things I chalked up to "food poisoning", "too tired", "physiological manifestation of stress", "didn't settle right", etc, were more likely celiac symptoms and not the hundreds of excuses I made up to try to explain to myself what was happening to me.

I'm still waiting for my sense of smell to back off... it has a little bit, but I'm still annoyed by it. Time will tell.

HOLY MOLY! I could have written this! Except no ADHD. I've had every procedure done that could be thought of for my daily headaches and migraines. I finally had radio frequency ablation done which burned the nerves leading to my headache trigger and have had no headaches for about a year now but the nerve is growing back and I can tell they're coming again.

But the sensitivity to smells REALLY shocked me. I smell things that no one else can smell AND the heat intolerance is terrible. I'm also a chronic insomniac, dry skin, stiff neck and shoulders (although I've had bones fused there), anxiety, mood swings, anemia (which they did a uterine ablation for), etc. Those things I hadn't even attributed to gluten.

The other things I wonder about is I'm a kidney stone factory and have too high of calcium levels.

I am untested (well no biopsy and a negative C-panel) but the reason I'm gluten-free is I had diarrhea every day for 2 years. Stomach bloating and stomach pain that caused me to double over and made me think I was having an appendicitis attack. I also have joint pains, fatigue and "brain fog" and the inability to concentrate. I used to be really smart! And it seems like my intelligence is slipping away.

Link to comment
Share on other sites
ishy Newbie
ishy
Posted

Extreme weight gain. No matter how healthy I eat I always seem to gain weight. IBS symtoms. I have been tested for celiacs which came back negative. So I'm now being tested for gluten intolerance.

Link to comment
Share on other sites
thegreatkatsby Newbie
thegreatkatsby
Posted

Extreme weight gain. No matter how healthy I eat I always seem to gain weight. IBS symtoms. I have been tested for celiacs which came back negative. So I'm now being tested for gluten intolerance.

I'm confused about the weight gain, because I'm significantly overweight and I always thought there was something fishy about it (because even though I don't exercise regularly, i'm a very "on the go" type and don't particularly binge eat or anything that would explain rapid weight gain--plus, after 3.5 years of skating 2-3 times a week for roller derby and GAINING weight... it was confusing). I've seen theories regarding "starvation mode" and the body holding onto calories due to malnutrition... but I'd be psyched if researchers could figure out the celiac/obesity connection.

Link to comment
Share on other sites
Igg postive Rookie
Igg postive
  • Author
Posted

Extreme weight gain. No matter how healthy I eat I always seem to gain weight. IBS symtoms. I have been tested for celiacs which came back negative. So I'm now being tested for gluten intolerance.

The weight gain for me is discouraging too. How are they testing your for gluten intolerance?

Link to comment
Share on other sites

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 lasthope2024's topic in Food Intolerance & Leaky Gut
      8

      This forum might be the last hope I have in my life. Please I beg you

      @BluegrassCeliac, I'm agreeing. It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together. If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well. If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide...
    2. BluegrassCeliac
      - BluegrassCeliac replied to lasthope2024's topic in Food Intolerance & Leaky Gut
      8

      This forum might be the last hope I have in my life. Please I beg you

      Hi, Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom...
    3. Scott Adams
      - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity...
    4. Nacina
      - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy...
    5. trents
      - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo the "gluten challenge" before testing but you need to understand that the...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,069
    • Most Online (within 30 mins)
      7,748
    angie78
    Newest Member
    angie78
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      This forum might be the last hope I have in my life. Please I beg you

      By knitty kitty · Posted

      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      This forum might be the last hope I have in my life. Please I beg you

      By BluegrassCeliac · Posted

      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      14 year old with Celiac & EOE still suffering...

      By Scott Adams · Posted

      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      14 year old with Celiac & EOE still suffering...

      By Nacina · Posted

      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      Waiting for urgent referral.

      By trents · Posted

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
×
×
  • Create New...