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
SweetAmber32
Posted

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
Lisa
Posted

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

lizard00 Enthusiast
lizard00
Posted

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
YoloGx
Posted
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
Glutina
Posted

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
Kritter
Posted

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
sunshine3230
Posted
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
sunshine3230
Posted

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
ksymonds84
Posted

. 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.

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. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread.
    2. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores).
    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      This sounds very similar to the neuropathic pain I experienced with type two diabetes. Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6. These are vitamins frequently found to be low in people with pre-diabetes and diabetes. Remember that blood tests...
    4. Scott Adams
      - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal....
    5. Scott Adams
      - Scott Adams replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Reverse Osmosis (RO) Water

      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated s...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,581
    • Most Online (within 30 mins)
      7,748
    MaggieSc
    Newest Member
    MaggieSc
    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

    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      Terrible Neurological Symptoms

      By Scott Adams · Posted

      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      Reverse Osmosis (RO) Water

      By Scott Adams · Posted

      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • 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.