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

New Here

SchnauzerMom

By SchnauzerMom
in Coping with Celiac Disease

Recommended Posts

SchnauzerMom Rookie
SchnauzerMom
Posted

I just joined today. I have been reading and learning here for several weeks. I have never been diagnosed with celiac or gluten intolerant. The main reason is because I can't afford insurance and the price for the tests would have to come out of pocket and my pocket doesn't hold much. My DH and I both have problems that the doctor called IBS. It was my DH's idea to learn about celiac disease. We have been on a gluten free diet for about 2 weeks now and both of us can tell the difference. I get really bad acid stomach when I eat something with gluten. Yesterday I ate some candy that had gluten and was sick most of the evening. It may be inconvenient but the diet is worth the trouble just to be free of pain. A book I have said to concentrate on what you can have instead of what you can't. I have been doing some baking with alternative flours and have gotten some really good results. Our eating the last couple of weeks has been the healthiest in years.

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

Celiac.com Sponsor (A8-M):


Corkdarrr Enthusiast
Corkdarrr
Posted

Welcome to the forum! I'm glad you found us and if you have any questions, don't hesitate to ask. Odds are that someone here has already wondered the same thing and would be happy to help.

Courtney

jerseyangel Proficient
jerseyangel
Posted

Well hi and welcome to the board! :D

Looks like you and your husband figured out for yourselves that you have problems with gluten. The positive response to the gluten-free diet is a valid diagnostic tool--it's great that you figured this out, and you now can start to feel better and be healthier in the long run.

Continue to read through old posts for tons of ideas--and I hope you'll jump in and post often! :) Let us know if there's any way we can help.

TinkerbellSwt Collaborator
TinkerbellSwt
Posted

Hello and welcome! You will find lots of answers to many questions on this board. If you have any yourself, please dont hesitate to ask. This is the best group of people I have come across.. someone is always around to help.

I am glad that you both just decided to stick with the diet without those test results. You will find quite a few people on here have done the same thing. Keep up the good work!!

Guest nini
Guest nini
Posted

welcome welcome! and yes positive dietary response is a very valid diagnostic tool and I'm glad you guys have figured out that gluten is a problem for you.

If we can help you with any recipe conversions or product questions, never hesitate to ask!

Canadian Karen Community Regular
Canadian Karen
Posted

Hi and Welcome!

I'm glad you found us - there are sooooo many here who have discovered the benefits of gluten-free living without actually going through the gauntlet getting an official diagnosis. The best way to determine if you have a problem with gluten is by applying the diet anyway, as both bloodwork and biopsies have a high rate of false negatives.....

Any questions you have, no matter what it is, just go ahead and ask us, and we'll try our best to help out. There's a great bunch of really knowledgeable people here who will chime in......

Again, Welcome!

Karen

lonewolf Collaborator
lonewolf
Posted

Welcome! Sounds like you're on the right track. Good for you to take your health into your own hands! Please stick around and feel free to ask lots of questions.

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

Celiac.com Sponsor (A8-M):


zachsmom Enthusiast
zachsmom
Posted

nice to meet you .

dlp252 Apprentice
dlp252
Posted

Hello and welcome! Dietary response is just as valid as other methods! My GI doctor (mainstream) doesn't agree with the Enterolab testing, but he can't argue with a positive dietary response!

spunky Contributor
spunky
Posted

Welcome!

I never got any diagnosis either. I've been gluten free for 9 months and feel better than I have for 15 years.

Actually, I forgot what it was like to just live, and not always worry about bathrooms, farting around people, feeling terrible, not being able to plan on doing things because you don't know how bad you're gonna feel, and all of that. I really forgot what it was like to just live. Forget the trouble of leaving out the gluten! Feeling really good and getting your life back is well worth the trouble for me!

Gamecreature Rookie
Gamecreature
Posted
Welcome!

I never got any diagnosis either. I've been gluten free for 9 months and feel better than I have for 15 years.

Actually, I forgot what it was like to just live, and not always worry about bathrooms, farting around people, feeling terrible, not being able to plan on doing things because you don't know how bad you're gonna feel, and all of that. I really forgot what it was like to just live. Forget the trouble of leaving out the gluten! Feeling really good and getting your life back is well worth the trouble for me!

I'll second that. I've just begun my diet (gluten-free for 5.5 weeks now) and while my body is still healing, the difference is great. A lot of the stuff I took for granted before has now ceased to be a problem. Good luck. Oh, and be sure to check out the "newbie survival kit" in Nini's sig.

Creative-Soul Newbie
Creative-Soul
Posted

Hello and welcome! Like you I couldn't afford all the "official" tests, and my wonderful doctor agreed with me that my dietary response was enough proof that I was gluten intolerant/celiac. There are wonderful people here, and you have a safe place to gain support, get advice and vent when you need to!

SchnauzerMom Rookie
SchnauzerMom
Posted
  • Author

Thanks everyone for the great welcome. I have already learned a lot here. I think this is a great place! :D

Guhlia Rising Star
Guhlia
Posted

Just saw your post now. Welcome welcome welcome!!! :D

bearly Newbie
bearly
Posted

I too was just diagonised on the 2nd of Oct. Has been a really rough month getting use to the diet with no improvement. Was back to the Dr. today and even with a positive bisopy he thnks there may be something else going on. Also did some research and found the protonics i'm on is not gluten free and maybe that is part of the problem. Does anyone have any ideas or suggestions. Am open to any help I can get right now.

Ursa Major Collaborator
Ursa Major
Posted

SchnauzerMom and Bearly, welcome to this board!

Bearly, you will get a much better response if you start your own thread to ask your question.

But if your probiotic has gluten, it is definitely a huge problem, and you need to switch to one that is gluten-free to get better.

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. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    3. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    4. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    5. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,877
    • Most Online (within 30 mins)
      7,748
    Christian Konig
    Newest Member
    Christian Konig
    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

    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
×
×
  • 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.