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

Scared

Jilly68147

Recommended Posts

Jilly68147 Newbie
Jilly68147
Posted

This is my first post. I have been reading now for 2 months. In college I got a blood test and the doctor told me I had a slight allergy to wheat. (That was about six years ago) I did not follow the diet becuase I thought it was to hard and I was in denial. In December I started having really bad back and side pains, so I decieded to start following the diet to see if that would help. It has a little but I am still in pain and now I am scared that I have waited to late and have caused more serious damage. I have been crying alot lately just scared of what it could be. In college I lost of friend to stomach cancer at the age of 22, so of course I am expecting the worse. I know I have to get that byopsy but I really don't want to.

About two weeks ago after reading everyones posts, I thought I just need to make the appointment and get it over with, so today I have my first appointment with the GI doctor. I am very very scared, so please wish me luck!

Thanks!

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

Celiac.com Sponsor (A8-M):


Jenn2005 Contributor
Jenn2005
Posted

Hi. I understand how scared you are but you are doing the right thing by seeking a dx. I was scared to death when my husband first got sick and I just drove myself crazy thinking they would find stomach or colon cancer when he went in for his biopsy. They were actually looking for cancer at this time, they never even mentioned or considered Celiac. So long story short when the biopsy came back it was positive for Celiac, and he had the gene test done which showed he had a Celiac and Gluten Sensitive Gene. He started the diet and has been gluten free for a little over 4 months now and we are seeing improvement. He was very sick when all this started and he has lost over 50 pounds but the improvements are happening. He has had 2 endospoy & colonoscopy procedures in 6 months and they have been clear of everything but Celiac and his 2nd one showed great improvement. Good luck on your procedure and keep reading on the board once you start the diet it will really help. Be sure to ask any questions everyone here is very friendly and happy to help.

Jennifer

Canadian Karen Community Regular
Canadian Karen
Posted

Hi!

Welcome to the board! I can understand your fear. There were a few times when my body was in such pain that I thought that my days were indeed numbered and cried because I was certain I wouldn't be around to see my children grow. I can remember sitting on the stairs, bent over in excrutiating pain, thinking the end was near. Gluten not only messes with your body physically, it also screws you up emotionally. That is why depression is so common with celiac disease. There are many people here actually when they get accidentally glutened, they become very short-tempered and unstable emotionally (me included!)

There are people on this board who literally have been on death's door before they finally got a diagnosis and they are healthy, vibrant gluten-free people now! You will get through this. Sounds to me like it is a strong possibility that it is celiac disease, and if that is the case, you are one step closer to regaining your health by finding out.....

I will be thinking of you today and sending you hugs........

Good Luck!

Karen

jerseyangel Proficient
jerseyangel
Posted

Jilly--Just want to welcome you in here and let you know that I understand your fears. I was ill for years--and had not even heard of Celiac. My dad had the early stage of colon cancer (thankfully he is still doing fine) and I was afraid that my problems had something to do with that. I saw a gastro. last spring, had the endo. and colo. (the colo. because at the time, we wanted to rule out other things, too). Happily, I didn't even have a polyp! Although I was dx. with Celiac, it was a sort of relief, because my mind was telling me it was going to be much worse. I know it's scary, but I think you're doing exactly the right thing. Make a list and tell him or her everything--even what you are afraid of. I'm sending good thoughts your way--let us know how you do :)

Guest stef 4 dogs
Guest stef 4 dogs
Posted
This is my first post. I have been reading now for 2 months. In college I got a blood test and the doctor told me I had a slight allergy to wheat. (That was about six years ago) I did not follow the diet becuase I thought it was to hard and I was in denial. In December I started having really bad back and side pains, so I decieded to start following the diet to see if that would help. It has a little but I am still in pain and now I am scared that I have waited to late and have caused more serious damage. I have been crying alot lately just scared of what it could be. In college I lost of friend to stomach cancer at the age of 22, so of course I am expecting the worse. I know I have to get that byopsy but I really don't want to.

About two weeks ago after reading everyones posts, I thought I just need to make the appointment and get it over with, so today I have my first appointment with the GI doctor. I am very very scared, so please wish me luck!

Thanks!

Boy do you have good company here! I was sick for almost 2 years and kept telling my husband I'm going to die and they'll never know why! I was so depressed and angry. I finally got a diagnosis and thought everything would be instantly better. I went into even deeper depression after I realized the impact this had on my life. I gained 30 lbs. adding insult to injury. I like this forum because alot of people here seem to have experienced the same thing and for the first time in a long time I no longer feel like a freak! This place has become a saving grace for me. Hopefully for you, in time with a good diagnosis and some comforting friends from here, we can help you get through your tough times. Even long distance cries with friends are cathartic! We have your back! Chins up!

Stef 4 Dogs

Jilly68147 Newbie
Jilly68147
Posted
  • Author

Well, I just got back from the doctor and I feel much better!! My byopsy is schedualed for March 21! She calmed most of my fears and told me that she will put me totally out for the procedure. So that was good! However, she told me that I should add gluten back into my diet to get an accurate reading. Just as my tummy feels a little better, I have to bring on the WHEAT!

Thanks for all the encouragement and support and taking the time to respond it means alot! :)

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 commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      I worried at one point on my journey whether I had MS, having many of the symptoms myself. However, my symptoms improved dramatically with high dose thiamine hydrochloride, Benfotiamine, and Thiamine TTFD. Thiamine deficiency symptoms overlap with MS symptoms, including changes on brain MRIs. Thiamine deficiency affected my eyes (light sensitivity),...
    2. trents
      - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products...
    3. Matthias
      - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen...
    5. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748
    Ellen Palo
    Newest Member
    Ellen Palo
    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
      Unexpected gluten exposure risk from cultivated mushrooms

      By trents · Posted

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      Unexpected gluten exposure risk from cultivated mushrooms

      By Matthias · Posted

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.