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

Been Very Sick For 2 Years-changes With gluten-free Diet

hviola

Recommended Posts

hviola Newbie
hviola
Posted

I have been very very sick for about 2 years. These symptoms popped up gradually over a period of 3 months when I was going through a lot of stress and a bout of pnemonia. (Although, I have always had problems with digesting, joint pain, and anxiety my whole life.) I have seen every doctor and they say I am in perfect health. I even had to quit my job because Im sick! And the Dr's say nothing is wrong!?! Through more and more research on my own, Im starting to think it is food allergies. So I was trying an elimination diet of the different main allergens. I started with gluten. And after 4 days gluten-free, I am showing improvement.

Here were my symptoms and the improvements so far, if any:

(Some I dont list improvements because its too soon to tell)

I am 29 years old and Female

Bad Fatigue (Gone now for 2 days.)

Brain Fog, cant think, confusion (feels a little better)

Extreme light sensitivity (About 20% better. I went to Walmart without feeling like I would pass out from the light)

Sound/Touch sensitivity

Nausea after eating (a bit better)

Anxiety

Depression

Fatty looking stools (not present for 2 days)

Stools only 2-3 times a week

Stomach cramps with frequent diarreah

Dizzyness/Lightheadedness

Had a spontanious miscarriage at 17 weeks!! For NO reason, nothing wrong with baby or me...

Joint pain-neck, lower back, knees, hips (havent felt any since quitting gluten so far)

A lot of times I just feel like I am stoned or had some drinks. Sometimes it even seems like I took some acid or something.

Get extremely sick when trying to diet (When I diet, I eat more cereal and whole wheat)

Severe tonsil infections since I was 8 years old, got them out at 23 years old!

Does any of this sound like symptoms you guys have gone through? Should I ask my doctor for an allergy panel to see if there are any other food allergies?

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

Celiac.com Sponsor (A8-M):


glutenfreegirl Enthusiast
glutenfreegirl
Posted

Hi I have never posted before so I hope I am doing this right!!

Anyway reading your psot I felt like I had writed it myself symptoms and all except for the misscarrage I am sorry for your loss

Iwould definetly get tested however I beleive you have to be eatting gluten for the test to be accurate..

good luck you are definetly in the right place to get help and answers everyone here is so friendly..

quote name='hviola' date='Aug 5 2008, 05:52 PM' post='453779']

I have been very very sick for about 2 years. These symptoms popped up gradually over a period of 3 months when I was going through a lot of stress and a bout of pnemonia. (Although, I have always had problems with digesting, joint pain, and anxiety my whole life.) I have seen every doctor and they say I am in perfect health. I even had to quit my job because Im sick! And the Dr's say nothing is wrong!?! Through more and more research on my own, Im starting to think it is food allergies. So I was trying an elimination diet of the different main allergens. I started with gluten. And after 4 days gluten-free, I am showing improvement.

Here were my symptoms and the improvements so far, if any:

(Some I dont list improvements because its too soon to tell)

I am 29 years old and Female

Bad Fatigue (Gone now for 2 days.)

Brain Fog, cant think, confusion (feels a little better)

Extreme light sensitivity (About 20% better. I went to Walmart without feeling like I would pass out from the light)

Sound/Touch sensitivity

Nausea after eating (a bit better)

Anxiety

Depression

Fatty looking stools (not present for 2 days)

Stools only 2-3 times a week

Stomach cramps with frequent diarreah

Dizzyness/Lightheadedness

Had a spontanious miscarriage at 17 weeks!! For NO reason, nothing wrong with baby or me...

Joint pain-neck, lower back, knees, hips (havent felt any since quitting gluten so far)

A lot of times I just feel like I am stoned or had some drinks. Sometimes it even seems like I took some acid or something.

Get extremely sick when trying to diet (When I diet, I eat more cereal and whole wheat)

Severe tonsil infections since I was 8 years old, got them out at 23 years old!

Does any of this sound like symptoms you guys have gone through? Should I ask my doctor for an allergy panel to see if there are any other food allergies?

samcarter Contributor
samcarter
Posted

Oh yes, I've had the brain fog. For the past 9 years I've felt like I was getting stupider and stupider. Add to that the depression I've had all my life (even as a little child), and suicidal thoughts.

For a while there it was feeling like i'd been drugged--after a meal of pizza or bread, I would just feel like somebody had given me sleeping pills, or I'd had a few drinks. It wasn't so much fatigue as total lethargy. And in the mornings (especially the morning after pizza) I'd feel like I had a hangover. Never wanted to get out of bed. And the bloating, oy.

I've been gluten free for four days, and it is getting better. I feel like my digestive system is still healing, BUT...interestingly enough, where i used to excrete all my vitamins (could tell because my vitamin pills are yellow, and I'd pee bright yellow the next morning), that's not happening. So maybe absorption is getting better. The brain fog and fatigue are most likely from malabsorption of B vitamins (same for depression and anxiety). Make sure you're taking a good B complex vitamin, gluten free of course, and try to take it with your evening meal to give your body time to metabolize it during the night.

KristaleeJane Contributor
KristaleeJane
Posted

Hello and Welcome

Well I just want to say that I have or should I say had a lot of the same symptoms, I am 28, and had tonsilitis, and strep throat so much growing up also and they eventually took my tonsils out at 23 also. I have been trying to get pregant for the last 9 mths with no luck, and so sorry to hear about your miscarriage.

I got diagnosed with celiac only about 3-4mths ago, and I am starting to feel so much better now, I had the blood work done and then a biopsy with both confirmed celiac disease.

If a diagnosis is important to you, you make want to consider that you have to be consuming gluten for the tests to be accurate, you shouldn't start gluten free until your tests are finished.

If diagnosis isn't important to you and you want to start the diet on your own then you don't need to worry about this.

Many of your symptoms sound like celiac disease, my doc tried to tell me I had IBS for a while too.

you should have a celiac panal of blood work done while consuming gluten and if they come back with any sign of celiac then your next step would be to have a biopsy.

Good luck

Krista

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

Hi! Allergy testing won't tell you if you have Celiac but it can help in determining if other foods bother you. That is what I am doing on the 11th. KristaleeJane is right about Celiac testing. Make sure you are consuming enough gluten or you could end up a false negative (that's what happened to me).

hviola Newbie
hviola
Posted
  • Author
Hi! Allergy testing won't tell you if you have Celiac but it can help in determining if other foods bother you. That is what I am doing on the 11th. KristaleeJane is right about Celiac testing. Make sure you are consuming enough gluten or you could end up a false negative (that's what happened to me).

I spoke with my doctor today, and he is going to send me to an allergist. He also said he wants to test me (blood tests) for celiac and other food allergies.

Did you get re-tested after your false negative?

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.