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

Very Confused


Nancy Lake

Recommended Posts

Nancy Lake Rookie

I think I need a doctor or a group in Phoenix.

Last week was hard. I am gluten free now for about 2 weeks. At first I was peeing a great deal. I guess I had been retaining water.

Lately I am just tired and my stomache rumbles alot. I still eat sugar. I still drink coffee.

I recently quite smoking too. So I have had a very rough week. Inspite of all the water weight I am loosing...don't think I am much thinner.

I have a huge weight problem. I probably need to loose about 60 pounds. Some people say, then your not Celaic...or you would be quite thin.

Maybe I am just detoxing...the tiredness and water loss. There is no pain..just tired. Have not been to the gym like usual.

I also take apple cider vinegar. Enzymes. Minerals, Vitamins...etc. Just don't know what to expect next.

I thought after two weeks I would get some energy back.

How long does it take the intestines to get healed. My liver feels enlarged or swollen too. Is that also part of the cleansing process?

More and More questions.

The last few months I was craving bread all the time. Is that typical of a Celiac not yet gluten free?

Oh, I know I need to part with more things. I don't eat a lot of sugar..but a little. Over all I am doing good except for coffee.

Will coffee keep me from healing? I am quitting so many things...

Thanks, Nancy


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



Celiac.com Sponsor (A8-M):



Aleshia Contributor

gluten causes your body to have withdrawal symptoms when you go off of it. maybe that is some of what you are experiencing?

ShayFL Enthusiast

It takes time. And forget what the doctors say. I was told I was too thin to be hypothyroid. And I am and now properly medicated.

mftnchn Explorer

My encouragement is to hang in there, it actually takes 1-2 years to heal. Overweight is also a symptom of celiac, your body is in starvation mode because you are not absorbing what you need, so you store fat. Also inflammation causes water retention.

Be sure you are fully gluten free, and also check your personal care products. Be sure you have stopped using pans and kitchen items that cannot be adequately cleaned from gluten.

In addition, may celiacs are sensitive to milk either temporarily due to intestinal villi damage or long term. Try eliminating milk for awhile.

Also a subset of us are sensitive to soy as well which has also been shown to cause villi damage in some people.

Take it a step at a time and keep posting here so we can help and encourage you. Read and search this forum for your questions there is a huge amount of great information.

TipTip Newbie

Hi there!

I am in the Phoenix area too... aren't you loving this heat? :)

I know I felt like crap for a couple months after going gluten free. I am now about four months out and I am feeling better - which is kind of funny because I did not feel bad before.

Give yourself time, this is not the easiest transition - or at least it was not for me. I am also an overweight Celiac and according to the BMI scales and everything at the doctor's office also have about 60 pounds to lose - but I take one thing at a time now, so for now I just focus on the gluten and pay attention to the fat - but I do not worry about it too much.

Although I really did feel better by leaps and bounds when I took out sugar and replaced it with anti-inflammatory foods.

Best to you, hang in there - this is a process, a slow process, but a process that does get easier over time... I swear.

tom Contributor

I also suggest being dairy-free & soy-free for at least a while then testing each.

Reducing or eliminating processed foods can be VERY helpful as well.

I lived in Phx (Ahwatukee) '05-'07 and subscribed to yahoo's PhxCeliac group.

Open Original Shared Link

Also there's Open Original Shared Link

& Open Original Shared Link

And I went to some monthly gluten-free meetings at the Tempe Whole Foods. Uhhhh :huh: 2nd Thursday of each month maybe?

I think other Phx area WhFds have them but can't recall which.

Some gluten-free restaurants besides chains:

Open Original Shared Link

Open Original Shared Link

Oops, thought I had another .. ..

Archived

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

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

      Small Bowel Resection 12 inches

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

      Small Bowel Resection 12 inches

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

      Small Bowel Resection 12 inches

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

      Small Bowel Resection 12 inches

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

      Small Bowel Resection 12 inches

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,832
    • Most Online (within 30 mins)
      7,748

    Duhgirl
    Newest Member
    Duhgirl
    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
      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
      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
      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
      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
      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.