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. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result. I am interested to know, is your gastroenterologist concerned? Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous...
    3. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    4. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748
    DenisC
    Newest Member
    DenisC
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.