Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

I've Suffered Long Enough!

Guest FLbetsy

By Guest FLbetsy
in Coping with Celiac Disease

Recommended Posts

Guest FLbetsy
Guest FLbetsy
Posted

Well...Praise God. I've found people who sound like me. I've been living with horrible symptoms for 28 years!!! Since my early 20's (I'm 51) I've had aweful bouts of diarrhea. When I was about 24, I was diagnosed with ulcerative colitis. Managed on and off (mostly off) with frequent bouts (daily) of 10-15 times. With a bad flare-up 20-30. I've been medicated every which way to Suday with everything from colitis drugs, depression/anxiety meds, Barretts esophagitis meds, asthma meds...you name it, I'm Walgreen's overflow backup. I was watching TV three weeks ago and saw something from Gluten-Free Girl. My daughter asked me if I thought I was allergic to food and I immediately said "Yes, honey, I break out in fat! I'm one of the obese possible celiacs. I called my GI doc the next day and asked for the blood panels to be done after staying up all night and pouring over the internet. The symptoms were me! Diarrhea, gas, bloating, nausea, weight gain, mal-absorption, mal-nutrition, insomnia, asthma, infertility (15 years ago) dermatitis, fatigue, joint pain, migraines, numbness in my hands and arms...I think that's all - Oh, and memory problems/loss of concentration. I've been unable to work for the past 6 years. I've been hospitalized 4 times for ulcerative colitis. I've had IV feedings and then started a "soft diet" of pasta and cream of wheat!!! I might as well called Kavorkian! I was poisoning myself and didn't know it. Tomorrow, I have an appointment with my GI doc. I can't wait to see him and tell him what I've come to believe. I started eating "mostly" gluten free for two weeks and I'm almost human. Oh, I still have some symptoms and I've not been as cautious as I know I need to become and yes, I know being cautious and mostly gluten free is like being a "little bit pregnant". I intend to get really commited tomorrow. It's probably too early to have blood results yet as the lab is in CA and I'm in FL and the South don't mooove too quick like. But, I can pray that my doc is receptive. Oh, did I mention that he was arrested and charged with drug use last week. Lord, Help me!! Now, I'm glad to read about others who deal with similar things like me. I'm thankful I have a wonderful husband who loves and supports me. I'm glad to learn now, about becoming gluten free and healthy and helping our 15 year old daughter to be gluten free herself and prevent these horrible problems. I'm most glad that I was watching TV and was open to see the amazing help available to me. I thank God for making me sit and watch whatever show it was. Obviously, my prayer is being answered. Thanks for listening. It's been a long time since I've been able to takl with anyone who would truly understand.

I can do all things through Christ who strengthens me...Phil 4:13

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

Celiac.com Sponsor (A8-M):


Sillyyakdidi Apprentice
Sillyyakdidi
Posted
Well...Praise God. I've found people who sound like me. I've been living with horrible symptoms for 28 years!!! Since my early 20's (I'm 51) I've had aweful bouts of diarrhea. When I was about 24, I was diagnosed with ulcerative colitis. Managed on and off (mostly off) with frequent bouts (daily) of 10-15 times. With a bad flare-up 20-30. I've been medicated every which way to Suday with everything from colitis drugs, depression/anxiety meds, Barretts esophagitis meds, asthma meds...you name it, I'm Walgreen's overflow backup. I was watching TV three weeks ago and saw something from Gluten-Free Girl. My daughter asked me if I thought I was allergic to food and I immediately said "Yes, honey, I break out in fat! I'm one of the obese possible celiacs. I called my GI doc the next day and asked for the blood panels to be done after staying up all night and pouring over the internet. The symptoms were me! Diarrhea, gas, bloating, nausea, weight gain, mal-absorption, mal-nutrition, insomnia, asthma, infertility (15 years ago) dermatitis, fatigue, joint pain, migraines, numbness in my hands and arms...I think that's all - Oh, and memory problems/loss of concentration. I've been unable to work for the past 6 years. I've been hospitalized 4 times for ulcerative colitis. I've had IV feedings and then started a "soft diet" of pasta and cream of wheat!!! I might as well called Kavorkian! I was poisoning myself and didn't know it. Tomorrow, I have an appointment with my GI doc. I can't wait to see him and tell him what I've come to believe. I started eating "mostly" gluten free for two weeks and I'm almost human. Oh, I still have some symptoms and I've not been as cautious as I know I need to become and yes, I know being cautious and mostly gluten free is like being a "little bit pregnant". I intend to get really commited tomorrow. It's probably too early to have blood results yet as the lab is in CA and I'm in FL and the South don't mooove too quick like. But, I can pray that my doc is receptive. Oh, did I mention that he was arrested and charged with drug use last week. Lord, Help me!! Now, I'm glad to read about others who deal with similar things like me. I'm thankful I have a wonderful husband who loves and supports me. I'm glad to learn now, about becoming gluten free and healthy and helping our 15 year old daughter to be gluten free herself and prevent these horrible problems. I'm most glad that I was watching TV and was open to see the amazing help available to me. I thank God for making me sit and watch whatever show it was. Obviously, my prayer is being answered. Thanks for listening. It's been a long time since I've been able to takl with anyone who would truly understand.

I can do all things through Christ who strengthens me...Phil 4:13

Good luck tommorow, i sincerely hope your Dr. is well educated in celiac and will give you the diagnoses/help you need!! What you said about being mostly gluten free is like being a little bit pregnant made me laugh so hard you have no idea, it is good you still have a sense of humor, hang in there!

Sillyyakdidi Apprentice
Sillyyakdidi
Posted
Well...Praise God. I've found people who sound like me. I've been living with horrible symptoms for 28 years!!! Since my early 20's (I'm 51) I've had aweful bouts of diarrhea. When I was about 24, I was diagnosed with ulcerative colitis. Managed on and off (mostly off) with frequent bouts (daily) of 10-15 times. With a bad flare-up 20-30. I've been medicated every which way to Suday with everything from colitis drugs, depression/anxiety meds, Barretts esophagitis meds, asthma meds...you name it, I'm Walgreen's overflow backup. I was watching TV three weeks ago and saw something from Gluten-Free Girl. My daughter asked me if I thought I was allergic to food and I immediately said "Yes, honey, I break out in fat! I'm one of the obese possible celiacs. I called my GI doc the next day and asked for the blood panels to be done after staying up all night and pouring over the internet. The symptoms were me! Diarrhea, gas, bloating, nausea, weight gain, mal-absorption, mal-nutrition, insomnia, asthma, infertility (15 years ago) dermatitis, fatigue, joint pain, migraines, numbness in my hands and arms...I think that's all - Oh, and memory problems/loss of concentration. I've been unable to work for the past 6 years. I've been hospitalized 4 times for ulcerative colitis. I've had IV feedings and then started a "soft diet" of pasta and cream of wheat!!! I might as well called Kavorkian! I was poisoning myself and didn't know it. Tomorrow, I have an appointment with my GI doc. I can't wait to see him and tell him what I've come to believe. I started eating "mostly" gluten free for two weeks and I'm almost human. Oh, I still have some symptoms and I've not been as cautious as I know I need to become and yes, I know being cautious and mostly gluten free is like being a "little bit pregnant". I intend to get really commited tomorrow. It's probably too early to have blood results yet as the lab is in CA and I'm in FL and the South don't mooove too quick like. But, I can pray that my doc is receptive. Oh, did I mention that he was arrested and charged with drug use last week. Lord, Help me!! Now, I'm glad to read about others who deal with similar things like me. I'm thankful I have a wonderful husband who loves and supports me. I'm glad to learn now, about becoming gluten free and healthy and helping our 15 year old daughter to be gluten free herself and prevent these horrible problems. I'm most glad that I was watching TV and was open to see the amazing help available to me. I thank God for making me sit and watch whatever show it was. Obviously, my prayer is being answered. Thanks for listening. It's been a long time since I've been able to takl with anyone who would truly understand.

I can do all things through Christ who strengthens me...Phil 4:13

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Good luck with your bloodwork -- but the bottom line is this: if your body responds to a gluten-free diet, and you FEEL BETTER when you don't ingest gluten, then go for it! I'm starting to be VERY skeptical about bloodwork . . . . . .

jayhawkmom Enthusiast
jayhawkmom
Posted

I'm also one of those who can't kick the weight. I had a baby 16 months ago....and the weight just will not move, no matter what I'd do. Well, I found out I was gluten intolerant - and removed it from my diet and started to lose weight.

Oddly enough, I didn't stick with it 100% and so the weight loss stopped. I got *dead serious* in November, since I was so sick and tired of being "sick and tired" - and I've lost 34 lbs!!!!

I eat no gluten. I severely limit dairy, no eggs (except baked in foods) - and the weight is just falling off me. It's awesome. And, I feel like a million bucks!!

Regardless of your blood test results, if you feel better on a gluten free diet, by all means... stick with it!!! You don't need positive blood tests to eat gluten free. All you need is the desire to feel better!!!

Lots of luck to you!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,175
    • Most Online (within 30 mins)
      7,748
    Chels22
    Newest Member
    Chels22
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
×
×
  • Create New...