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

Wow!

missmommy

Recommended Posts

missmommy Contributor
missmommy
Posted

im new, but ive posted here and there all night. i can not get over how many things ive been reading are me! im bummed that i have celiac, but im very excited that everything ive been telling the drs all these years are not all in my head!!

i will seem to get rage for no reason out of no where. sometimes my brain is so fuzzy i cant hold a conversation. sometimes my grasp just wont hold on like my hands are no longer working. i'll get tired for days.

im so excited to even start to hope there might be a end in sight for all this!!!

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

Celiac.com Sponsor (A8-M):


wowzer Community Regular
wowzer
Posted

Welcome, I know the feeling. So many symptoms that I have complained or had over the years. It does help knowing what the cause is. I think that going gluten free isn't so bad when it makes you feel better. Take care and I hope that you feel better soon.

Ed-G Newbie
Ed-G
Posted

Hi, and welcome to the forum. Is brain fog the only symptom you get?

Ed in MD

missmommy Contributor
missmommy
Posted
  • Author
Hi, and welcome to the forum. Is brain fog the only symptom you get?

Ed in MD

no but it sure is a big one! when i was younger i always tested high but did awful in school. i could not concentrate or remember anything that was told to me min.s before.

i also have had tummy problems most of my adult life.

im sure i would have went years if not my whole life if my mother didnt have celiac disease and tell me to get tested too. unfortantly she didnt catch it until many medical problems, including haing a third of her colon removed.

  • 1 month later...
Janeti Apprentice
Janeti
Posted
no but it sure is a big one! when i was younger i always tested high but did awful in school. i could not concentrate or remember anything that was told to me min.s before.

i also have had tummy problems most of my adult life.

im sure i would have went years if not my whole life if my mother didnt have celiac disease and tell me to get tested too. unfortantly she didnt catch it until many medical problems, including haing a third of her colon removed.

EVER SINCE I WAS LITTLE, MY TEETH USED TO BLEED WHEN I BRUSHED THEM, ALWAYS HAD DENTAL PROBLEMS. ALSO HAD LOW BLOOD SUGAR, AND FOR YEARS USED TO WAKE UP OUT MY SLEEP SCREAMING WITH MUSCLE CRAMPS. AS AN ADULT IT WAS A DOWNWARD SPIRAL BEING DIAGNOSED WITH HASHIMOTOS, A SLEW OF GI PROBLEMS, BRAIN FOG, CONSTANT SINUS INFECTIONS, NEUROLOGICAL PROBLEMS, AND DRS WHO HAD KEPT ON TELLING ME THAT I WAS JUST DEPRESSED...WHATS WITH THE DRS?? :angry: JANET

wowzer Community Regular
wowzer
Posted

I know what you are feeling. I complained of so many symptoms for years. Why do so many doctors miss this? I think the brain fog was one of the things that went away first when I went gluten free. I hope you are feeling better soon.

Rosewynde Rookie
Rosewynde
Posted

Doctors are human, just like we are. They only know what they've learned, and unfortunately that means they don't know everything, just more about most medical things than your average human. Just hope you have a doctor that will listen to the information you've dug up on the internet. Some Doctors get upset when you try and self diagnose, even when your getting good results. If your doctor won't listen to you I'd find someone else that will, but realize, they still know a lot more than we do on most things so it is worth it to listen to their advice too. Also, just because one doctor is an idiot, doesn't mean they all are : D

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

Celiac.com Sponsor (A8-M):


wowzer Community Regular
wowzer
Posted

My family doctor did believe me. Besides dealing with the gluten intolerance, I was dealing with female problems too. I was seeing the same gynecolgist for almost 20 years only to discover that he really didnt' know how to deal with my sitution. He also didn't bother to find out about it when he easily could have. I know that all doctors aren't idiots, but this one put me through the ringer. It turns out part of the female problem I was having disappeared after going gluten free. The specialist that he sent me to also didn't figure it out. I will say her test result led me to this site though. I know that their are good doctors out there. My familty doctor had just been to a seminar about celiac disease, when I asked him if he thought I could have DH. He was kind enough to go to his car and copy all the information for me from the seminar. He also has given me printouts from another celiac patient that he has. He still believes that I could have it even though my bloodwork came back negative.

Crystalkd Contributor
Crystalkd
Posted
My family doctor did believe me. Besides dealing with the gluten intolerance, I was dealing with female problems too. I was seeing the same gynecolgist for almost 20 years only to discover that he really didnt' know how to deal with my sitution. He also didn't bother to find out about it when he easily could have. I know that all doctors aren't idiots, but this one put me through the ringer. It turns out part of the female problem I was having disappeared after going gluten free. The specialist that he sent me to also didn't figure it out. I will say her test result led me to this site though. I know that their are good doctors out there. My familty doctor had just been to a seminar about celiac disease, when I asked him if he thought I could have DH. He was kind enough to go to his car and copy all the information for me from the seminar. He also has given me printouts from another celiac patient that he has. He still believes that I could have it even though my bloodwork came back negative.

You could still very well have it. For instance I don't produce enough IGA. The GI said that can cause a false negitive. None of my test have ruled it out and I'm doing Awesome on the diet. My internist is running an allergy panel and a couple of other things just to be sure there isn't any thing else going on.

  • 4 months later...
kozmosz Newbie
kozmosz
Posted
<_<<_< Hi I am new to this...it was difficult to log in but I managed it.I also have many good behavioral changes. I am less compulsive less craving (erotically) and less depressed and all this is already worth not eating gluten. But i have to get up nightly four times to urinate and this did not change since I try to eat glutenfree.Of course it might have a diffeernt cause, I will go to the doctor.
  • 5 months later...
geokozmo Rookie
geokozmo
Posted

Hi i am also new. But I am so happy to fel some hope and relief. My diarrhea and foggyness, fatigue and cravings started to diminish. Except on days when I eat something glutenized and the symptoms reappear. I do all I can to stay clean. I am sometimes angry at doctors but I feel so grateful basically for this unexpected healinmg opportunity thru a simple diet that I forget to be angry. My only remaining problem is that I get up nightly several times to pee (sorry - but I heard others have that too and they say it lasts not forever.)

Geo

geokozmo Rookie
geokozmo
Posted

It frightens me to see myself as the last responder in last November and then again after half a year with the same issue I am kind of replying to myself. I hope everybody else has completely recovered that is why I am all alone in a glutenfree e-space.

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. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    2. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    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.

      @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...
    4. 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...
    5. 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...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748
    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    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

    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • 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?
×
×
  • 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.