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

Newly Diagnoised With Gluten Intolerance


SweetAmber32

Recommended Posts

SweetAmber32 Apprentice

I am newly diagnoised into this wrold of Celiac Disease/ Gluten Intolerance. Unfortunantly I was not able to be tested as I have no health insurance. I have been out of work for a year due to Fibromyalgia and maybe even Gluten Intolerance. I found out of my intolerance due to eating Seitan. For those who don't know what that is, it is a "meatless" gluten product made for vegetarians. Talk about feeling miserable. Hives, burning, severe lethargy, etc. I made a Doctors appt, that got canceled due to snow, so a new appt was made. To prepare for this appt. I purposely ate seitan again. I did not want my Doctor thinking I was being a hypochondriac. Luckily he did not. He took one look at me and said I was Gluten Intolerant. I even had breathing difficulties later that night. I have been eating gluten/ wheat free for nearly a month now and I feel great. I told my mother recently, that I must have had this since I was kid as I always have had stomach problems. She took me to the Doctor when I was a kid, but the tests were negative. Then about 3-4 years ago I woke up one day and could not button nor zip my pants. I had to hold by pants up by safety pins. In a month my weight went up by 20lbs and I started heart burn and acid reflux. I was diagnoised with having acid reflux, but the meds never worked and even when i avoided foods I stil had heart burn and acid flux. My weight has gone up by nearly 60 lbs since that day. And the bloating was bad. I even develped severe IBS. But since I changed my diet and I try to watch it like a hawk, my IBS is gone, the bloating gone, the heart burn and acid reflux gone, my weight is going down, my clothes are getting bigger. Even some of my aches and pains associated with Fibromayalgia ( I was diagnoised with this in August) have lessened some. I have not felt this great, in I don't know how long. I can even breathe while sleeping on my back and right side, which I have not been able to due for the last few years. I can tell that alot of those on this forum, that they consider their illnesses a nightmare. But I see it differently. I've been given a gift. I have been given a new lease on life. :D


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Welcome! You have found a great place. If you have any questions, please feel free to ask.

lizard00 Enthusiast

Welcome to the Forum and the world of better health!!!!

I've been given a gift. I have been given a new lease on life.

I completely agree with you!! Before I discovered my intolerance to gluten, my life was going from bad to worse. And now, I have a few days where I get bummed out that I can't eat a brownie or pizza, but those days are getting less and less as I feel better and better. I am thankful that my illness can be controlled by food instead of some pill I would have to take for the rest of my life and worry about crazy side effects!!!

YoloGx Rookie
Welcome to the Forum and the world of better health!!!!

I completely agree with you!! Before I discovered my intolerance to gluten, my life was going from bad to worse. And now, I have a few days where I get bummed out that I can't eat a brownie or pizza, but those days are getting less and less as I feel better and better. I am thankful that my illness can be controlled by food instead of some pill I would have to take for the rest of my life and worry about crazy side effects!!!

Here here!

By the way I was diagnosed as an infant but reintroduced to grains when I was 4. It was downhill all the way. Doctors just didn't get it back then and are only starting to now. I am glad your doc and you figured this out. I had to do it on my own like so many others.

Yolo

Glutina Rookie

hello from another newbie in the gluten-free way of life!

I just wanted to say that your positive attitude towards your diagnosis will certainly help in your return to health...I know that by viewing my diagnosis as "hey--at least now I know what to do to get healthy" rather than "oh poor me, I have to change my life now", I have seen marked improvements in my health even in the month I have been gluten free. (And when there was a slip-up, BOY was I reminded with a vengeance what terrible things I used to live with on a regular basis!)

Bye for now, and welcome!

-Glutina ;)

Kritter Rookie

Welcome! Nice to meet you! I'm pretty new here as well. I'm only 3 weeks gluten-free, but like you, I have a whole new outlook on life! I feel hopeful and encouraged for the first time in a long while and the people here are great! Something you said in your very first post has already been an inspiration to someone else (me) so that should also make you feel good! One of my most vexing and hard to figure out problems is that of being unable to breath at night when laying flat. Your testimony that you are improving in that regard gives me hope!! Thanks!

Kritter

sunshine3230 Newbie
Welcome! Nice to meet you! I'm pretty new here as well. I'm only 3 weeks gluten-free, but like you, I have a whole new outlook on life! I feel hopeful and encouraged for the first time in a long while and the people here are great! Something you said in your very first post has already been an inspiration to someone else (me) so that should also make you feel good! One of my most vexing and hard to figure out problems is that of being unable to breath at night when laying flat. Your testimony that you are improving in that regard gives me hope!! Thanks!

Kritter


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



Celiac.com Sponsor (A8-M):



sunshine3230 Newbie

Hey - just diagnosed last week. Wish I had not put up with years and years of feeling miserable thinking it was just "normal" for my body. Just starting with gluten-free and for me it will just be making sure I know what to eat & what not to eat I suppose. But all of these success stories definitely give me hope. I don't want to get too excited too soon, but after only 20 or so hrs gluten-free, my tummy feels completely different and has stopped that incessant gurgling/churning sensation. Am hoping my sinus headaches go down in number too as I have been reading many celiacs whose headaches have gone away since going gluten-free. Cheers all!

ksymonds84 Enthusiast

. I did not want my Doctor thinking I was being a hypochondriac. Luckily he did not. He took one look at me and said I was Gluten Intolerant.

Welcome to the board! Sounds like you have a very smart doctor, your very lucky!

Archived

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

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

      IBS-D vs Celiac

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

      IBS-D vs Celiac

    3. - 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.

    4. - 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.

    5. - 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.

  • 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
      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
      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
      @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
      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
      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.