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

Day 2 Gluten Free-- General Questions


Lisa16

Recommended Posts

Lisa16 Collaborator

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


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



Celiac.com Sponsor (A8-M):



BRob66 Rookie
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.

happygirl Collaborator

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: Open Original Shared Link

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!

Lisa16 Collaborator
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

Lisa16 Collaborator
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: Open Original Shared Link

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

kschauer Rookie

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.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,812
    • Most Online (within 30 mins)
      7,748

    kayleigh ogg
    Newest Member
    kayleigh ogg
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It looks like they are naturally gluten-free, but not labeled gluten-free. It's unlikely that they contain any gluten, but not impossible. This is the one I looked at: https://www.preservision.com/areds-2-formula-minigels/
    • Scott Adams
      Welcome to the gluten-free journey—it sounds like you’ve been through a lot, but it’s great to hear you’re feeling better since cutting out gluten! The struggle to get clear answers can be so frustrating, especially when tests come back negative but your body is clearly reacting. It’s smart to hold off on retesting for celiac until you’ve reintroduced gluten (if you choose to), but in the meantime, listening to how your body responds is key. The overlap with perimenopause and gut issues is no joke—hormones really do throw everything into chaos! It’s awesome that you’re working with a kinesiologist and focusing on whole foods; that’s helped so many of us here too. And yes, eating out is a minefield. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • trents
      @Izelle, you are welcome! It is important to know that beginning the gluten-free diet or even a reduced gluten diet previous to celiac testing will invalidate the testing. One should seek out testing before experimenting with eliminating gluten. Also, remember that celiac disease is not a food allergy. It is an autoimmune disease. When a celiac consumes gluten it triggers an autoimmune response that damages the lining of the small bowel. That can be confusing to a lot of people because it is an autoimmune response that involves food. So, allergy testing is of no use in diagnosing celiac disease. Of course, people can also have allergies to wheat, barley or rye (the three gluten-containing grains) but that is an entirely different immune system response.
    • cristiana
      Hello Suze and welcome to the forum. Can you tell us which country you are posting from?  The reason I ask is that in some countries, it is quite a good idea to be tested for coeliac disease because if it turns out you are a coeliac, you will be given additional support by the government.  For example if you live in the UK, the NHS offers support from a nutritionist, DEXA bone scans to check for osteoporosis/osteopenia to which coeliacs are sometimes prone, additional vaccinations against certain illnesses, annual reviews with a gastroenterologist to check for dietary compliance and possible health complications, and, in some regions, a prescription to help with the purchase of gluten free bread and other staples, which can be pricey. Another example is Italy.  According to the Celiac Disease Foundation, in Italy, coeliacs are given up to 140 Euros a month to buy specifically gluten free food.  (Source: https://celiac.org/gluten-free-living/global-associations-and-policies/policies-around-the-world/#:~:text=Diagnosed celiacs receive vouchers to,to deal with celiac disease.) But with regards to your white blood cells, my levels were similarly low from memory a couple of years ago during a period of quite high stress.  It was picked up in a pre-op blood test.  But nobody blinked an eyelid at the results.  A few months later at my coeliac review with my gastroenterologist the levels had normalised.  As you are concerned, do raise it with your doctor, but it could well just be a blip as it was in my case.      
    • Michael P
      Hello,  I apologies in advance if this topic has been covered previously, but I am new to the site.  Can someone tell me if they know of a certified gluten free Areds 2 vitamin ?  ,, I was taking RITE-AID brand but it seems to be very difficult to acquire as of late.  I have tried Baush & Lomb , and had a reaction so I am staying away from anything that doesn't state "GLUTEN FREE" on the label.  Thanks in advance for your help in this matter.    Michael P 
×
×
  • Create New...