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. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    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)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.