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

3 Years Gluten Free And Not Any Better


CBare88

Recommended Posts

CBare88 Newbie

Hello!

I am brand new to this forum but have been spending a lot of time lately browsing topics to hopefully find some help or at least someone in my same boat! :(

I was diagnosed with celiac 3 years ago and have been following a very strict gluten-free diet ever since. I finally hit my my wall yesterday. I feel so frustrated and exhausted with myself. I have ups and downs - some days I feel okay, others not so much. But always a constant is the size and discomfort of my stomach. I weighed 120 pounds when I was diagnosed. Ballooned to 138 a few months after my diagnosis. I am relatively thin and have been my whole life. I also have diabetes. And, I know that can play a huge role in my weight fluctuating. But over the past week I have gone from 126 to now a whopping 140. That is over 10 pounds in one week. My stomach is larger than ever and I constantly feel an uncomfortable pressure.

No - I am not pregnant. (Although, I am tired of people asking if I am!!) :) I don't know what I am doing wrong! I know I have not been mistakenly "glutened" because I am SO careful! I have scheduled two gastroenterology docotor's appointments. One next monday and the other a month later. So, I guess my question is if anyone else is having this issue and what could possibly be causing it? I want to be educated enough to have the right questions when I go to the doctor. I am convinced something else is wrong - but have no idea what.

Please help! :(

-Chelsea


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

If you have gained 10 lbs in one week, run, do not walk to the doctor! You are retaining a lot of water. That is dangerous to your heart! This may have nothing to do with your GI tract. Go to the regular doctor. Call & ask to speak to the nurse. Tell her you have gained 10 lbs in a week. They should get you in right away.

CBare88 Newbie

If you have gained 10 lbs in one week, run, do not walk to the doctor! You are retaining a lot of water. That is dangerous to your heart! This may have nothing to do with your GI tract. Go to the regular doctor. Call & ask to speak to the nurse. Tell her you have gained 10 lbs in a week. They should get you in right away.

Okay - thank you. I feel like something is really off. Maybe I am overreacting - but it's better to know for sure. I will definitely call my doctor asap. Thanks again. :)

dilettantesteph Collaborator

What have you been eating? Do you know that some celiacs get glutened by gluten free foods? Is your diet produce and meats?

Reba32 Rookie

Yes, please let us know what you have been eating, we may be able to help a little better. I agree that an immediate trip to the doctor's office is in order, as it may be something related to your diabetes, rather than Celiac disease. How have your BG levels been? Are you managing that?

You may also have other food intolerances, like the usual suspects, dairy, peanuts, tree nuts, or soy. If you're eating a lot of packaged gluten free foods, you may also be getting way too many carbs for what is healthy for a diabetic (most packaged gluten-free foods derive from rice and potato flour, and don't have much fibre left in them after processing!).

Are you having regular bowel movements? If not, that can certainly add to weight and discomfort around the middle.

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. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      6

      Severe severe mouth pain

    2. - trents replied to Charlie1946's topic in Related Issues & Disorders
      6

      Severe severe mouth pain

    3. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      40

      My journey is it gluten or fiber?

    4. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      6

      Severe severe mouth pain

    5. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      6

      Severe severe mouth pain

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

    • Total Members
      132,900
    • Most Online (within 30 mins)
      7,748

    sai4a
    Newest Member
    sai4a
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • knitty kitty
      Oh, my dear!  Get off that Fairlife chocolate protein shake!  That's got milk in it!  Egads! Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  If the villi grow back, they can resume making lactase again.   I react to casein and lactose both.  I get sores in my mouth and coated tongue, and inflammation, my Dermatitis Herpetiformis flares up, I get cold sores or shingles, and TMJ pain, well, joint pain in general, and my brain health is really affected, depression and anxiety.  So dairy is a really scary horror movie.     I take Benfotiamine and Thiamine TTFD  (tetrahydrofurfuryl disulfide).  These have anti-viral properties.   I've had chicken pox/shingles, and I also harbor the cold sore herpes virus which traveled to one eye through a nerve. It's broken now.  I had really bad nerve pain in my check at the time, then it turned into Bell's Palsy.  Thiamine TTFD helped clear up the dysphagia I was also experiencing then.  I took lots of Lysine to fight the herpes viruses as well.  Between the Thiamine TTFD and the Lysine, and avoiding dairy, mine stays dormant for the most part.   I also take a B Complex, and Magnesium Threonate to help the Thiamine TTFD work, Vitamin C, Vitamins A and D, and Zinc supplements to help Thiamine TTFD fight off those viruses. I have Sjogren's so I understand dry eye and mouth.  I found including Omega Threes, healthy fats, improved my problem.  You know how oil floats on top of water?  That's going on in our body, too.  Flaxseed oil supplements, and flaxseed oil to use on food is one way I increased my Omega Threes.  Choline and sunflower seed oil supplements are other choices I've tried.  Eat real food!  Eat fresh vegetables and fruit!  I had cooked stew in a crockpot until super mushy so I could chew and swallow it without lots of pain.  I got a bag of mandarin oranges, Cuties, whatever they're called now.  They're not too acidic.  Gluten free crackers don't have any nutritional value, no vitamins.   I followed the low histamine version of the Autoimmune Protocol Diet.  The book The Paleo Approach by Dr. Sarah Ballantyne has been most helpful.  She's a Celiac herself, and the diet has been shown to improve intestinal health. I have seen liquid vitamins on line.  Thiamine TTFD comes in a capsule, but tastes really strongly of garlic, so be prepared if your Gatorade tastes funny.   
    • trents
      @Charlie1946, celiac disease damages the lining of the small bowel which is the part of the intestinal track where all our nutrition is absorbed. Celiac disease, therefore, often results in nutritional deficiency related health issues. In addition, you describe a diet that sounds largely devoid of fruits and vegetables and dairy (for calcium). This does not bode well for good oral health or good health in general.  It can take two years or more for good healing of the lining of the small bowel after adopting a consistently gluten free diet. In the meantime, adding in good quality supplements can help compensate for poor nutritional absorption efficiency. Common over the counter vitamins and supplements are often optimized for shelf life rather than good assimilation/utilization by the body. We commonly recommend that those struggling with nutritional deficiencies start taking high potency B-complex, 5-10,000 IU of E daily, D3, Zinc and magnesium glycinate. They need to be checked to make sure they are gluten free since wheat starch can be used as a filler in pills and vitamins. Costco Kirkland Signature and Nature Made brands are often good choices. What is causing your swallowing problems? Is it the thrush?
    • knitty kitty
      The Benfotiamine and thiamax need magnesium to make life sustaining enzymes.  Yes, go ahead and take the Benfotiamine and Thiamax now and include the magnesium as soon as possible.   Yes, take the magnesium at breakfast, too.   I take my Benfotiamine and TTFD Thiamax and B Complex  at the beginning of breakfast.  I take the magnesium after I finish eating breakfast.  Yes, I take NeuroMag.  
    • Charlie1946
      @knitty kitty thank you for replying so quickly! I have not done well at all taking vitamins or supplements, I have such a hard time swallowing even small pills, so I have resorted to crushing them and taking them with Gatorade.  Pretty much I eat baked chicken tenders, Fairlife chocolate protein shakes, gluten free crackers. Thank you so much for the advice, I will try it all for sure, because everything I have tried OTC has done nothing 
    • Charlie1946
      Hi, thank you for the quick reply! I was diagnosed about 5 years ago I think,  I try to be extremely careful with what I eat so I don't get cross contamination. I used to get little sores in my mouth when I was little, usually from sucking on hard candy, but L-lisene would clear it right up. I got that Nasal Navage thing and used it twice and that's when I thought I had a sinus infection. So I got a z pack. Then I noticed my tongue was coated and it was white except right down the middle which was more brown and crusty, like the corners of my mouth. I also have dry mouth and I went way too long before I started treating it. So then I had some kind of huge pill and Nystatin mouthwash. My mother in law's new husband ( they live upstairs) started complaining of exactly the same symptoms as me. He went to urgent care, they said it wasn't thrush, it was shingles. We both went to our dentist's for cleanings, I don't have insurance so I really couldn't tell they cleaned my teeth at all. But she said my mouth looked good, all cleared up. I had a day and a half of no pain and then it came right back. So I got more pills and miracle mouthwash. There are times it feels like dry socket and times it feels like it's bleeding but it's not. I don't see any gum or facial swelling, I did see a couple of tiny ulcers on my bottom lip, roof of my mouth is still sore, and my tongue and cheeks are still a little coated. I am just at a loss. My mother in law's husband, they  took swabs and called back a week later and said it was a new herpes variant virus that is going around but not contagious. He was cured after a week! And I'm going on 3 months 😭
×
×
  • 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.