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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,561
    • Most Online (within 30 mins)
      7,748
    Valentino
    Newest Member
    Valentino
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.