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

Newies Story So Far!


Serenity1366

Recommended Posts

Serenity1366 Newbie

Hello All,

I have been suffering over the last cough 6 years with bloating...I know I should have gone to the doctors then, but hey.   So 2 years ago, I cut out bread, and that stopped the migraines and diarrhea. But I replaced the bread with Weet-a-bix and milk for lunch at work. 

 

Ok, I know this was silly, knowing that cough cough years ago my doctor then, told me to cut out wheat and milk...but hey back in the 80's there was not much to eat (that is my excuse and I'm sticking to it). So I ate Rye bread; funny it didn't get better!  If only the internet was around.

So constipation and I have been great friends over the years. We've stuck together like glue, you could say.

 

Anyway, finally I could take no more!  So I started keeping a food diary for a week.  Cutting out gluten...or what I knew was gluten.  I would love to say it has been easy sailing with no hiccups.  But the Tesco Cottage Pie defeated me for 2 days, by exposing my ignorance at reading the back of the packet and the lack of  gluten-free food in the small Tesco’s Express, I grubbed at it. Then, there was the MayonnaiseL.  I am now wiser with a happier tummy, only because I have been accosting people at the gluten-free shelves in Sainsburys and Tescos. And bombarding them with questions.

 

Last Tuesday, I arrive at the doctors with my food diary, sick record from work and list of symptoms to show the doctor.  Ready to do battle to get him to read my food diary or fall at his feet and beg him not to ask me to eat gluten so he can run blood tests. 

 

He just looked at me and asked why I had left it so long. And started writing a list of foods I could eat.  I was a bit shocked with the milk and oats (yeah I know I should not have been, but I was), didn’t really understand about potatoes and white rice being taken out of my diet. But by the power of Google it’s something to do with the body seeing it as gluten sometimes.

 

The real reason I have joined you fair folk is to stop feeling so isolated and confused.  I have had a really bad time since I have given up gluten.  Tummy is great, but I have a bad head, feel totally weak, hands are swelling up in the night, a bit dizzy and yawning my head off. Same foggy head, so no change there. I am so tired I am not been going to work. Is these symptoms normal?

 

I revisited my doctor this week who sent me for blood tests (Thyroid, Ferritin, Liver and Kidney and few other things), I am now waiting for the results.  He has suggested we speak about me returning to gluten for 5 weeks, so I can be tested for Coeliac. I am still unsure what to do.

 

 

 

Thank you for reading my story.

Serenity1366


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Hello All,

I have been suffering over the last cough 6 years with bloating...I know I should have gone to the doctors then, but hey.   So 2 years ago, I cut out bread, and that stopped the migraines and diarrhea. But I replaced the bread with Weet-a-bix and milk for lunch at work. 

 

Ok, I know this was silly, knowing that cough cough years ago my doctor then, told me to cut out wheat and milk...but hey back in the 80's there was not much to eat (that is my excuse and I'm sticking to it). So I ate Rye bread; funny it didn't get better!  If only the internet was around.

 

 

You might want to have the doctor check that cough!   :D

 

Potatoes and rice and milk and gluten-free oats are safe for Celiacs.  However, some people can't digest milk until they heal.  Some people, with or without Celiac, can't digest milk (lactose intolerance).  Oats must be labeled gluten-free and even then a few Celiacs have issues with them.  It is usually recommended that you wait 6 moths to a year before trying them.

nvsmom Community Regular

Welcome to the board.  :)

 

I hope you continue to feel better on the gluten-free diet. Let us know how your tests go.

GottaSki Mentor

Welcome Serenity :)

Serenity1366 Newbie

cough cough :lol:  will do.

 

Just another question...I woke up this morning with joint pain in all my joints and swollen fingers, they normally swell up a bit at night when I sleep and I have to take off my wedding ring as I wake up in pain. But with the weight I have lost over the last few weeks it is very loose during the day time.  Question - is this normal after coming off gluten?  

 

I must said there is some weird stuff going on with my body at the moment. :blink:  

I will miss the hair falling out :(  (I have very thick hair),  but I will not miss the self inflatable tummy :wacko:

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
      133,156
    • Most Online (within 30 mins)
      7,748

    mike101020
    Newest Member
    mike101020
    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

    • 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.