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. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    2. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,416
    • Most Online (within 30 mins)
      7,748

    Heather8280
    Newest Member
    Heather8280
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.