Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Lisa16

Day 2 Gluten Free-- General Questions

Rate this topic

Recommended Posts

Hi. I was misdiagnosed with IBS (despite having very high IgA count) and have been sick for over 23 years now. I am in pretty bad shape-- joint pain, debilitating diarrehea, muscle pain, recurring dermatitis. I think it got pretty advanced. This is my second day of being gluten free and even though my stomach doesn't hurt as much now (was that a dramatic revelation!) and even though there has been some improvement in the diarrehea, I still got sick today (but with dramatically less cramping). Given that I was sick for so long (most of my adult life,) how long is it going to take before I see improvement in the diarrehea? How long before I can start digesting vegetables again? What can I expect? And what advice would you give a person in my situation?

Lisa16

Share this post


Link to post
Share on other sites
Hi. I was misdiagnosed with IBS (despite having very high IgA count) and have been sick for over 23 years now. I am in pretty bad shape-- joint pain, debilitating diarrehea, muscle pain, recurring dermatitis. I think it got pretty advanced. This is my second day of being gluten free and even though my stomach doesn't hurt as much now (was that a dramatic revelation!) and even though there has been some improvement in the diarrehea, I still got sick today (but with dramatically less cramping). Given that I was sick for so long (most of my adult life,) how long is it going to take before I see improvement in the diarrehea? How long before I can start digesting vegetables again? What can I expect? And what advice would you give a person in my situation?

Lisa16

I was also misdiagnosed years ago, I am currently seeing a naturopathic doctor and he is trying to heal the villi in the small intestine which could take 6months to a year. I was just diagnosed with celiacs but have been gluten-free for about two months. It took about a month for my muscle/joint pain to go away,,and i thought I was just getting old...LOL. the last couple of weeks have been great and i was living on Benadryl. i would seek out a good naturopathic doc and maybe see what other foods you may be reacting to. i am soyfreee,egg free and dairy free as well as a host of other things right now because of the damage to the small bowel. I hope u feel better real soon.

Share this post


Link to post
Share on other sites

The best advice I can give you is to stick with it. It'll take weeks or months to start feeling better. There is no one answer. Your body has to stop reacting to gluten, heal itself, and then make up for all the time that you haven't been absorbing well. Some see minor changes in the first week, others don't see changes for weeks...its hard to tell. But its important to be as 100% gluten free as possible in order to help with the healing process.

Dr. Green, a leading Celiac expert, has this on his webpage: http://www.celiacdiseasecenter.columbia.ed...nts/A02-FAQ.htm

Q: I've just been diagnosed with celiac disease. How soon will I feel better?

Most patients respond rapidly to a gluten-free diet and will often report an increased feeling of well-being. How well they feel, and how quickly, may vary depending on the nature, severity and duration of symptoms prior to diagnosis. There may also be some "ups and downs" as they work toward the goal of eliminating all gluten from their diet. There is usually a learning curve to finding what food, drink and drug products are safe and which contain gluten.

Also----

Read the forum and/or be involved in a local support group

Learn to effectively read labels and make informed decisions

Read Dr. Green's book on Celiac

Have ALL first degree relatives tested via bloodwork

Best of luck!

Share this post


Link to post
Share on other sites
I was also misdiagnosed years ago, I am currently seeing a naturopathic doctor and he is trying to heal the villi in the small intestine which could take 6months to a year. I was just diagnosed with celiacs but have been gluten-free for about two months. It took about a month for my muscle/joint pain to go away,,and i thought I was just getting old...LOL. the last couple of weeks have been great and i was living on Benadryl. i would seek out a good naturopathic doc and maybe see what other foods you may be reacting to. i am soyfreee,egg free and dairy free as well as a host of other things right now because of the damage to the small bowel. I hope u feel better real soon.

Thanks for the timeline-- I am surprised it takes so long, but I guess it makes sense since there is damage to heal. Does anybody know if there is a relationship between the length of time you are sick/ untreated and getting intestinal cancer? That is my big worry.

I can relate to the Benadryl-- I was also taking it at night and found it did help with the joint pain and I also felt it made my stomach feel better (taking it during the day was out because it knocks me out)-- but when it wore off, it seems like those things came back with a vengence. The joint pain was terrifying because it was getting hard to walk down stairs (something you think you should be able to do in your 40s!) I thought I was going to have to sell my house.

Also, why do you think a naturopath is better to a regular doctor? I have always wondered about this (I have never been to one).... do they have different training for autoimmune problems? Or is it because they are more open-minded and consider treatment options other than pills like probiotics?

Lisa16

Share this post


Link to post
Share on other sites
The best advice I can give you is to stick with it. It'll take weeks or months to start feeling better. There is no one answer. Your body has to stop reacting to gluten, heal itself, and then make up for all the time that you haven't been absorbing well. Some see minor changes in the first week, others don't see changes for weeks...its hard to tell. But its important to be as 100% gluten free as possible in order to help with the healing process.

Dr. Green, a leading Celiac expert, has this on his webpage: http://www.celiacdiseasecenter.columbia.ed...nts/A02-FAQ.htm

Q: I've just been diagnosed with celiac disease. How soon will I feel better?

Most patients respond rapidly to a gluten-free diet and will often report an increased feeling of well-being. How well they feel, and how quickly, may vary depending on the nature, severity and duration of symptoms prior to diagnosis. There may also be some "ups and downs" as they work toward the goal of eliminating all gluten from their diet. There is usually a learning curve to finding what food, drink and drug products are safe and which contain gluten.

Also----

Read the forum and/or be involved in a local support group

Learn to effectively read labels and make informed decisions

Read Dr. Green's book on Celiac

Have ALL first degree relatives tested via bloodwork

Best of luck!

Thanks! Especially for the website-- it answered some more of my questions. I also called my first degree relatives and told them to get tested (nobody had mentioned this, so thank you.) If relatives are found to be positive for the antibodies, is it a sure thing they have it? I also referred them to that website.

I already notice a marked difference in terms of pain and mental outlook, so I will definitely be sticking with this. Luckily my local supermarket has lots of stuff, so it doesn't seem like it will be that hard to do-- not a big sacrifice. The only thing-- I cannot seem to find crackers-- that is kind of a bummer.

I appreciate your advice!

Lisa16

Share this post


Link to post
Share on other sites

I have been gluten free for only two months and I feel tons better. The brain fog is lifting, I have more energy it seems and almost no more pain.

I second the advice on calling relatives. I called mine and found out I had one cousin who had been diagnosed for a while and another cousin was mysteriously ill with symptoms all pointing to celiac. I would have appreciated a phone call, I might have been diagnosed earlier.

Best of luck.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 20, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
What are your iron results?  Was ferritin (iron stores) taken?  Are you actually anemic (low hemoglobin)?  The results you posted are your Immunoglobulins.  Looks like your IgE is high, but then it is Spring and allergy season is supposed to be pretty bad this year (at least in the US).  What riggers your allergies (e.g. cats, horses, mold, etc.)? Have other autoimmune issues been ruled out that could cause tendinitis or vertigo?    
  • Blog Entries

  • ×
    ×
    • Create New...