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

Crying And Frustrated

alexsami

By alexsami
in Coping with Celiac Disease

Recommended Posts

alexsami Contributor
alexsami
Posted

gluten free for a month...symptoms..diarrhea, gas, bloating....better days, not better others....everything upsets my stomach....it has just really gotten me down today...actually have first Gastro dr. appt tomorow, maybe he can shed some light :(

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

Celiac.com Sponsor (A8-M):


Pie Lover Newbie
Pie Lover
Posted

I'm in the same boat. Good luck!

ravenwoodglass Mentor
ravenwoodglass
Posted

Things can be up and down for a bit. Are you going with mostly whole unprocessed foods? That is the best way to avoid cross contamination. You mention that you have been gluten-free for a month and are having your first GI appointment tommorrow. Have you had any celiac testing done yet? If not you really need to go back on gluten for any chance of accurate test results. Even then you could still have a false negative on testing. Many of us also have to drop dairy for a while when we go gluten free as it can be hard for us to digest.

I hope your GI is helpful and that you are feeling better soon.

alexsami Contributor
alexsami
Posted
  • Author

i had a celiac panel done by the GP.....it came back with an elevated gliadin antibody, nurse called said i had celiac disease and to go gluten free....so here i am :(

ravenwoodglass Mentor
ravenwoodglass
Posted

i had a celiac panel done by the GP.....it came back with an elevated gliadin antibody, nurse called said i had celiac disease and to go gluten free....so here i am :(

If you had a positive blood test then you do need to be gluten free. The GI doctor may want you to do a gluten challenge for the biopsy. The choice whether to do one or not is yours alone to make. While already being gluten free may impact the biopsies for celiac it will not impact testing for other problems that may be there. If you need to be gluten free and you do challenge it may make you feel even worse than before you went gluten free.

Katrala Contributor
Katrala
Posted

The choice whether to do one or not is yours alone to make.

While I do agree with this statement, you (OP) need to be aware that since a biopsy is still the "gold standard" for diagnosis for many physicians, one that is not "real" or not having one at all can potentially lead to problems down the road with insurance and any other situation that may arise where you need to "prove" you have celiac disease.

I've been in a dispute with my insurance company already regarding prescription medication. If a medication has gluten in it and the doctor prescribes a different brand, they want to charge me the highest copay if a generic is available (I have a 10/20/40 plan) since they are considering it a "choice" instead of a medical need. My insurance company would only change it once my GI wrote a letter stating the medical necessity of me not being prescribed the one with gluten.

There may be doctors who would do this without a biopsy, although mine told me my diagnosis was "complete" when I had the positive blood work and positive biopsy followed by a positive response to the gluten-free diet.

mamaw Community Regular
mamaw
Posted

Hello

It does take time to heal & detoxify yourbody. For some it happens quickly & others it takes a couple of years but don't give up... You didn't get this way overnight nor will you get better overnight....

Gluten is like poision so you will feel ups & downs...depressed,anger,sadness,why me? all part of recovery.......

A suggestion would be to try to stick with the very basic foods, naked meats, fish, limit fruits & veggies.. Stay away from heavy processed foods even though they may be gluten-free....nightshade & dairy free may also be off limits until your stress intestinal tract can heal....

Digestive enzymes & probiotics may also help you along.....

hope you feel better soon......

blessings

mamaw

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

Celiac.com Sponsor (A8-M):


Gill03 Newbie
Gill03
Posted

Hi there I'm new on here just joined and wanted to give everyone some help. Plesae don"t despair and try not to let this pathetic disease get you down.

I was dignosed with celiac disease 6 years ago and I can tell you it's a frustrating diet to lead and stick to. But what I want share with everyone is that please don\t give up as there is light at the end of this long dark tunnel. I have had rectal bleeding recently so after I visited my gastroentorologist last week he admitted into hospital today for a colonoscopy and gastroscopy and guess what.....MY VILLI HAS NOW GROWN BACK AND HE SAID IT IS NORMAL.....what a relief to know that cutting gluten out of my diet really does help...he will be advising me whether I am able to now eat some gluten foods or not. I just wanted to try help you all out there knowing that this is life long disease it really does help to be strict with your gluten. I also have not touched oats at all as they really made me very very ill. Good luck to you all with staying happy and gluten free.

Gill03 South Africa

sa1937 Community Regular
sa1937
Posted

Hi there I'm new on here just joined and wanted to give everyone some help. Plesae don"t despair and try not to let this pathetic disease get you down.

I was dignosed with celiac disease 6 years ago and I can tell you it's a frustrating diet to lead and stick to. But what I want share with everyone is that please don\t give up as there is light at the end of this long dark tunnel. I have had rectal bleeding recently so after I visited my gastroentorologist last week he admitted into hospital today for a colonoscopy and gastroscopy and guess what.....MY VILLI HAS NOW GROWN BACK AND HE SAID IT IS NORMAL.....what a relief to know that cutting gluten out of my diet really does help...he will be advising me whether I am able to now eat some gluten foods or not. I just wanted to try help you all out there knowing that this is life long disease it really does help to be strict with your gluten. I also have not touched oats at all as they really made me very very ill. Good luck to you all with staying happy and gluten free.

Gill03 South Africa

Welcome to the forum! Congratulations on doing so well on your diet that all your little villi have grown back!!! But why, oh why, would you want to even think of adding gluten back into your diet when it's taken you six years to get to where you are today? Once a celiac, always a celiac...so we need to be gluten-free for life.

ravenwoodglass Mentor
ravenwoodglass
Posted

Hi there I'm new on here just joined and wanted to give everyone some help. Plesae don"t despair and try not to let this pathetic disease get you down.

I was dignosed with celiac disease 6 years ago and I can tell you it's a frustrating diet to lead and stick to. But what I want share with everyone is that please don\t give up as there is light at the end of this long dark tunnel. I have had rectal bleeding recently so after I visited my gastroentorologist last week he admitted into hospital today for a colonoscopy and gastroscopy and guess what.....MY VILLI HAS NOW GROWN BACK AND HE SAID IT IS NORMAL.....what a relief to know that cutting gluten out of my diet really does help...he will be advising me whether I am able to now eat some gluten foods or not. I just wanted to try help you all out there knowing that this is life long disease it really does help to be strict with your gluten. I also have not touched oats at all as they really made me very very ill. Good luck to you all with staying happy and gluten free.

Gill03 South Africa

Please don't go back to eating gluten even if the doctor says you can. Once a celiac always a celiac. You have healed and you want to stay that way.

Katrala Contributor
Katrala
Posted

Please don't go back to eating gluten even if the doctor says you can. Once a celiac always a celiac. You have healed and you want to stay that way.

Agreed.

I've heard several people recently mention that their doctors / nutritionist / etc. said it would be OK to try gluten again after healing. I don't understand why in the world this advice would be given.

Roda Rising Star
Roda
Posted

I've been in a dispute with my insurance company already regarding prescription medication. If a medication has gluten in it and the doctor prescribes a different brand, they want to charge me the highest copay if a generic is available (I have a 10/20/40 plan) since they are considering it a "choice" instead of a medical need. My insurance company would only change it once my GI wrote a letter stating the medical necessity of me not being prescribed the one with gluten.

I never thought to challenge this. I have a similar prescription plan. I guess so far I've been lucky enough to find a generic that is gluten free. Of course this didn't come easy either. Took calling and going to several pharmacies.

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. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    4. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.