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

Help! Six months gluten free and sick again

Hollybee
 Share

Recommended Posts

No more doughnuts Rookie
No more doughnuts
Posted

Hi there!  I hope this helps you.

I have Celiac disease and DH for 15 years now.  I am 65.

I was on a very strict "gluten free" diet for years and kept having setbacks.  (That's what I call them).  I had daily migraine headaches, terrible rash, muscular pain, joint pain, loss of balance, hair falling out, and the list goes on.  Oh yes, and may I add to that...weight gain.  I was really swollen.

I was a nurse years ago, and I knew the doctors weren't really well informed about this disease.  All they say:  "stay away from gluten"...and I was, however, continued to be sick!

I had to figure this out.  Celiac disease is an autoimmune disease.  I researched until I found what the problem was.

Gluten is just ONE TYPE of LECTIN.  Many other foods have LECTINS!!!  So, I went on a Lectin free diet and within weeks...yes...weeks...my inflammatory symptoms disappeared!!!!  Lectins are POISON to those of us with ANY type of autoimmune disease.  Why don't most doctors know this???  Because they treat patients with medications and don't really study nutrition.  This is sad but true.

I have been on a lectin free diet for 4 months now and feel like a new human being!  I have lost 25 lbs...all of that was swelling due to inflammation.  I no longer have migraines, all of my joint pain, muscular pain...all the rash...gone!!!!!!!!

My favorite source is Dr. Steven Gundry...he is a well know cardiologist and the only one I know of, that stepped out of the box to research lectins and how bad they are and why.

I hope this helps you.  If you have a thyroid issue, this may be another autoimmune issue for you, so you really want to look into staying lectin free.  I realize this is hard...I have to cook all of my own foods and bake my own bread, etc., but I am feeling healthy and like a new human being.  Dr. Gundry is on youtube…I hope you at least give this a try...the results will be worth it!  

  • 2 weeks later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


twilightsparkle Newbie
twilightsparkle
Posted
(edited)

This is the first time I've ever posted here but I learned I had celiac about a decade ago, back when the one brand of gluten-free bread available at the store had the flavor and texture of sawdust. And I'm not exaggerating. I majored in Dietetics and a group of us tested it in a lab. It. Was. Awful. Anyway, I've been a baker for over half my life. In recent years I've used Bob's Red Mill, which was okay for a long time but recently has been making my partner and me very thirsty, plus it has an odd aftertaste and is SO dense. Like my biscuits and cakes kept coming out depressingly flat, even after I'd reduce and sift flour, add extra egg white and baking powder, reduce oil, etc. Nothing was working. A couple months ago, at my wits' end, I was like wait, I remember loving King Arthur Flour once upon a time. Lo and behold, they have gluten-free flour and it. is. AMAZING. I've so far made fluffy biscuits and two batches of fluffy dinner rolls, as well as piggies in a blanket in these past couple weeks. Oh, how I've missed fluffy, flaky bread! It kneads really well. I usually do about a teaspoon of yeast in some warm water with a tablespoon of honey. Once that's bubbly I throw it in a bowl with the flour and an egg and other ingredients. Recipes that measure weight are more reliable than those that measure cups. I haven't even needed to add arrowroot or psyllium for better binding. I just follow recipes to the letter (plus the honey trick). I like to knead for a few mins, let proof for half an hour to an hour, knead again, shape, then let proof for half an hour to an hour again, then bake.
Back when I was really, really, really sick, I couldn't process gluten or dairy or... even regular grains. Rice was going straight through me. I was losing 5 lbs a week and already underweight. Couldn't handle fruit either. So I basically lived off of meat, beans, nuts, and veggies for a few months until my digestive tract stabilized. Then I slowly reintroduced rice, then dairy, etc. It's not uncommon for people with Celiac to also have issues with corn or soy. I'd try going completely grain free for a little bit. Good luck with all your tests and everything! Lots of hugs.

Edited by twilightsparkle
Keight Enthusiast
Keight
Posted

Cyclinglady has good advice. I have taken up a paleo-keto(ish)-clean food diet to help heal my intestines. I feel better for it. But I do eat sweet potato. All my food comes from nature's packaging and have one single ingredient. Helps me isolate what might cause me GI distress. 

Plus, I have no desire to pay through the nose for processed gluten-free foods, nor attract more medical issues. 

I sincerely hope you find answers because it is horrid to have to live as some of us have/still do.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,697
    • Most Online (within 30 mins)
      7,748
    Nicole Poirier
    Newest Member
    Nicole Poirier
    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

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.