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

New To This


iffy

Recommended Posts

iffy Rookie

I've been slow to connect the dots, but this site has been extraordinarily helpful. I've never had

the pain, bloating or multiple other symptoms that celiacs have, but I get diarrhea without warning

and sometimes with little control. I've had this to some degree for ten years.

I have a diagnosed hiatal hernia with acid reflux - this year I had severe heartburn that lasted two weeks, scared me and I had an upper GI that showed no change in five years. Dr. gave me Protonix that made no difference at all, diet control was what helped. I had started to suspect gluten, and after reading a lot on celiac, realized that it wasn't the usual suspects that gave me heartburn, but the little wheat crackers I love, biscotti, (and over-eating). I tried adding psyllium husk, seemed to help, but this week I'm starting strict gluten-free to try to sort it all out. I had thought I had IBS, but now I'm sure it's the gluten. There's a genetic component too, I think, my mother claimed she had colitis, had the diarrhea and I don't know what else.

I was diagnosed with an auto-immune disease this year (non-hodgkins lymphoma), it's not

symptomatic and I'm not being treated. I'm 74, never had allergies, so it was a shock, all this,

I thought celiacs were born with the condition.

Activia yogurt helped me, and I'm thinking of adding a proteolytic enzyme, serrapeptase, after

the gluten-free trial.

Anyway, thanks for listening, and for this fantastic forum!

iffy


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



Celiac.com Sponsor (A8-M):



YoloGx Rookie
I've been slow to connect the dots, but this site has been extraordinarily helpful. I've never had

the pain, bloating or multiple other symptoms that celiacs have, but I get diarrhea without warning

and sometimes with little control. I've had this to some degree for ten years.

I have a diagnosed hiatal hernia with acid reflux - this year I had severe heartburn that lasted two weeks, scared me and I had an upper GI that showed no change in five years. Dr. gave me Protonix that made no difference at all, diet control was what helped. I had started to suspect gluten, and after reading a lot on celiac, realized that it wasn't the usual suspects that gave me heartburn, but the little wheat crackers I love, biscotti, (and over-eating). I tried adding psyllium husk, seemed to help, but this week I'm starting strict gluten-free to try to sort it all out. I had thought I had IBS, but now I'm sure it's the gluten. There's a genetic component too, I think, my mother claimed she had colitis, had the diarrhea and I don't know what else.

I was diagnosed with an auto-immune disease this year (non-hodgkins lymphoma), it's not

symptomatic and I'm not being treated. I'm 74, never had allergies, so it was a shock, all this,

I thought celiacs were born with the condition.

Activia yogurt helped me, and I'm thinking of adding a proteolytic enzyme, serrapeptase, after

the gluten-free trial.

Anyway, thanks for listening, and for this fantastic forum!

iffy

Hi Iffy,

Welcome to the forum!

Many people don't get celiac until they are older. The gene potential is there for life, but often does not show itself unless sufficient stress triggers the response. Once you have it however you have it for life.

In addition, one can have celiac and not know it for quite some time.

Untreated celiac can easily trigger other auto immune diseases, so I agree--with this non Hodgkins lymphoma it would be wise to go off all gluten, including trace gluten (toasters, wooden cutting boards and utinsels used previously for glutenous foods etc. etc. as well as minute amounts in toothpaste, shampoo, soaps, from shaking other people's hands, Fix-all, glues etc. etc.). There is a list here on celiac.com that tells you about trace gluten found in a variety of foods...

Chronic diarrhea by the way is classically indicative of celiac.

Of course with celiac often comes leaky gut and thus many other food intolerances, esp. to milk (esp. at first) except plain yogurt (though some still can't handle it--its better for me if I make it myself and let it ferment for 24 hours to get rid of all the lactose). Consider using plain stevia as a sweetener.

The protealytic enzymes are great for helping heal the lining of the intestines (as well as any other scar tissue you might have).

You might be greatly helped by taking cinnamon tea fairly regularly against the diarrhea. Occasional carob tea is also nice. Again use stevia as a sweetner. Berry leaf tea also works (like blackberry or raspberry).

I also like to use fresh ground up flax seed with a quarter of a teaspoon of apple pectin as bulking agents. The flax seed gives you much needed omega 3's. Recently I have added a teaspoon of marshmallow root powder (soothing and healing, it helps take down intestinal inflammation).

If you reduce your reliance on grains in general and eat more vegetables you may notice a real health boost. Recently I have taken to blending vegetables once a day--it really gives me a lot more energy as well as enzymes etc. Good against things like lymphoma as well as very good for the intestines etc. I then have my regular cooked vegetables or salad later in the day... Am not suggesting vegetarianism by the way... Those with celiac often do better eating some meat each day.

Am glad you found this forum. There really is a lot of info and support here you probably won't get elsewhere. Good luck!

Bea

iffy Rookie

Thanks!! Wonderful advice, helps motivate me to keep on track, even with the holiday

season coming up.

I have low thyroid, too, diagnosed when I was a kid, I used to fall asleep at the table

listening to the radio, and get hauled off to bed.

Iffy

YoloGx Rookie
Thanks!! Wonderful advice, helps motivate me to keep on track, even with the holiday

season coming up.

I have low thyroid, too, diagnosed when I was a kid, I used to fall asleep at the table

listening to the radio, and get hauled off to bed.

Iffy

Low thyroid often goes together with celiac. My mother and my boyfriend both have both so to speak. Herbs can help but usually don't do the whole thing.

glad to help meanwhile. I need to get motivated to write my book on all this actually...

Yes holidays are hard. However there are an awful lot of gluten-free recipes out there if you look--just google your hearts desire. soon I will post a great low glycemic no lactose pumpkin pie recipe with a simple rice crust. Mush rush off now however... Best advice I can give is to just eat what you make from scratch or make sure whatever is made out there for you in a completely gluten-free kitchen.

Bea

GFinDC Veteran

Hi Iffy,

Celiac can show up at any age. The advice to follow a simple whole foods diet is good. It is easier to eliminate hidden gluten sources if you don't eat processed foods. Things to avoid would be any processed foods like boxes of this and cans of that etc. You can start with rice and frozen or fresh veggies. If you use frozen veggies check the label and get a package that has just the veggies, not a whole bunch of other ingredients. Maybe some meat like chicken or hamburger etc. Remember that everything counts in celiac. So your vitamins, your sodas, beer, candy, medicines all need to be gluten free. Eliminating processed foods can save you a lot of time reading labels in the store.

Another thing that helps people is liquid B-12, and sometimes an extra Vitamin D pill. Celiacs are often low on vitamins due to malabsorption.

So, steer clear of wheat, rye, barley, oats, and dairy for a while. Celiacs often have problems with dairy at first. Although some never get past it.

This diet can be an easy thing to follow if you keep your diet simple. When you decide to add something new to your diet, add only one new thing every other day. That way you can more easily identify food reactions if they occur.

Welcome to the health eating world of celiacs! :D

YoloGx Rookie

Good advice, though be careful of the hamburger. Sometimes it has gluten in it. Check to make sure they put in no extenders...

Bea

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. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

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

      IBS-D vs Celiac

    3. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

    4. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
×
×
  • 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.