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

Its Been A Long Road

ranger

By ranger
in Coping with Celiac Disease

Recommended Posts

ranger Enthusiast
ranger
Posted

ive been reading the forums for awhile, but just decided to join in. I had a negative blood test and a negative biopsy but feel so much better gluten free that Ive decided to ignore all that and go gluten-free. Ive been sick for a year and a half- gone from 110 lbs. to 84 lbs at my low point. Been gluten-free since Oct. 31 ( except for some major glutenings through all the holidays!) Am now up to 94 lbs.(hooray) and feeling much better. I probably would have never stopped eatin gluten after the biopsy if it werent for the info Ive gotten on this forum. For that, I thank you all! Have always been a cook- now relearning everything, bit eating rather well.I really feel sorry for those that dont cook on this diet.Again thank you

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome. I am glad you are starting to feel better. It does take a bit to get the hang of things but it sounds like you are well on your way.

sbj Rookie
sbj
Posted

If you haven't already done so, you might consider a complete blood count, vitamin and mineral testing, and a bone density scan. These are tests that are recommended for those newly diagnosed with celiac disease.

Jestgar Rising Star
Jestgar
Posted
If you haven't already done so, you might consider a complete blood count, vitamin and mineral testing, and a bone density scan. These are tests that are recommended for those newly diagnosed with celiac disease.

Or not. Not everyone chooses additional testing.

sbj Rookie
sbj
Posted
Or not. Not everyone chooses additional testing.

That's sort of why I wrote "you might consider"

Must every well-intentioned suggestion come with a disclaimer?

rinne Apprentice
rinne
Posted

Hi and welcome. :)

Congratulations on taking your health into your own hands. I have found this site enormously helpful too.

A vitamin and mineral panel check at minimum is very helpful, it is quite possible your B12 and D are low and that can be dealt with simply, if not dealt with it may lead to other problems.

And I am not a doctor. :)

I had negative blood work too and I didn't wait for the endoscopy because it was scheduled for five months after I went gluten free and there was little use in having it done at that point. I had already decided I was never going to eat gluten again.

Jestgar Rising Star
Jestgar
Posted
That's sort of why I wrote "you might consider"

Must every well-intentioned suggestion come with a disclaimer?

Sorry, I didn't mean to be argumentative, I was just trying lessen the immediate burden of a lifestyle change. Sometimes the info comes too fast and it's intimidating. I wanted to emphasize that additional testing is optional, and doesn't need to happen immediately.

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

Celiac.com Sponsor (A8-M):


marciab Enthusiast
marciab
Posted

I agree all this info can be overwhelming but getting your nutrient levels tested could save you some recovery time.

I was tested after about a year on the diet and found to be B12 and iron deficient. I felt a whole lot better once I got those built back up.

And .. I was just retested a few months ago, 3 years after starting the diet and found out I'm chromium deficient.

Oh and if you're feeling weak or dizzy, a BG tolerance test would be a good idea too. These are things that are easily treated and can make a big difference in how you feel.

sbj Rookie
sbj
Posted
Sometimes the info comes too fast and it's intimidating.

That's true!

Ranger, the weight loss seems a bit scary so there could be a deficiency there that might benefit from quick action - a supplement from your doctor. On the other hand, there is no absolute requirement to do any of these tests, and most deficiencies resolve themselves after being on the gluten-free diet for a while. It's your call on what to do beyond the gluten-free diet, if anything.

Life would be so much more simple if everything was a yes or no, black and white, do this don't do that, wouldn't it? All we can do is gather information and try to make informed decisions.

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. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    2. Ello
      - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results. Thank you
    3. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to...
    4. Ello
      - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response.
    5. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,831
    • Most Online (within 30 mins)
      7,748
    ATownCeliac
    Newest Member
    ATownCeliac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
×
×
  • 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.