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mstrain

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mstrain Rookie

I have been gluten-free since the middle of July and as long as I stick to fresh meats, fish, fruits and veggies, I am fine. My very supportive husband bought a bread machine and tons of cook books and we've been trying new recipes each weekend. I am finding that my stomach is upset after consuming food with the new flours; pancakes, pizza, Bette Hagman's featherlight bread. I'm finding the taste OK but I have quite a bit of gas and indigestion after eating them. Does it take time for the body to adjust to these new flours? I'm having a hard time because I am asymptomatic - I actually feel worse eating these items than I did before my diagnosis. Could I be allergic to something else?

This leads me to another question - anybody else out there start out asympomatic? How much time went by before you developed symptoms? I am terrified of the damage I may be doing due to being glutenized without knowing it. I'm pretty sure I am being contaminated by the simple fact that I have a 5, 3 and 1 year old - my 1 year old is always sticking his hands in my face, grabbing my food, etc. My five year old makes her own PB&J and may not be careful, plus we are all new to this celiac-thing! Teaching sharing used to be a big topic in our house, and now I can't share and the kids are having a tough time with this (especially my three year old who doesn't understand "gluten allergy!) :(


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tarnalberry Community Regular

You could certainly be sensitive to other grains. I would try making something simple out of a single grain to try to work through the options. (Pancakes or tortillas work fairly well for this for most flours though taste may not be optimal.) Just make the exact same recipe, the same way, with differing flours, and see how you respond. Alternatively, you can try the grains whole, and rinsed, as it could be a cross-contamination problem in the manufacturing plant, depending on the manufacturer.

Merika Contributor

Some celiacs initially have trouble with ALL grains. If your villi are messed up, you may not digest any of them well, and have just built up a certain tolerance level for wheat, the one you are most accustomed to.

Go with what your belly is telling you and try again in 6-9 months with the exotic flours. You may have better luck then.

I don't mean to be confusing - the other grains don't have gluten and won't cause damage, you'll just not feel very good eating them. I have trouble digesting a lot of the non-gluten grains too.

Merika

WLJOHNSON Newbie

Hi,

I'm glad you're now on a gluten-free diet. I am 60 years old and have been having symptoms (Asthma) since I was 8, but no one knew what was causing it or what to do. Many elimination diets of certain foods finally convinced me that I must be allergic to all grains, all milk and dairy products, egg whites and yeast. This process took 30 years, but finally I was eventually told that I have Celiac Disease, which gave me a name for my illness and got me to this board.

Now I read labels religiously and avoid maltodextrin, casein, and whey in addition to those things I listed above. Even I, after struggling with this for so long, am finding new and better products to eat, especially within the last year. In addition, my new grandson had Celiac also, and I have been able to help him as well. My sister and cousin were recently diagnosed, and I hope to be of some help there too, so everything seems to be falling into place.

I am still amazed that I can walk into a Burger King and ask for a hamburger with no bun, only to learn that the mayo has eggs in it and they lose patience during the process of my orderding something different than that to which they are accustomed. However, I can usually go to Carl's Jr. and get a Six Dollar Burger, no cheese, low carb, and have very little trouble, so there IS HOPE!

I hope your time of grieving your losses will quickly pass, and you will find that you are a pioneer of sorts, leading the way for others just learning that they have Celiac. Estimates are that 1 of every 133 Americans has it.

I just found Van's Wheat Free waffles, Soy Delicious Ice Cream, and Ener-G Wheat Free, Yeast Free Bread. I almost took the bread back, but instead I melted some vanilla soy ice cream, dipped the bread in it and made french toast, something I haven't had for YEARS. I added maple syrup and powdered sugar, and I was in Heaven.

Good luck to you in your quest for good health. Welda Lou

printmaker81 Rookie

I'm wondering if maybe it's not just the grains in the new breads but the other ingredients. Do you use milk and eggs in your breads? Either of these could possibly be making your stomach hurt. I had the same reaction to new breads, gas and cramps. A few weeks ago, I made just an omlet and had the same reaction as I was having to the breads. Now I make my bread using Ener-G's egg replacer which is gluten, soy, and dairy free, and I haven't had any more problems with the breads. Sometimes even if you're not intolerent of dairy, soy and eggs they can upset your stomach while you're still in your healing period.

As far as the kids go, is there anyway you could make their foods gluten free, too? If they're young, they might be more likely to join in on the gluten-free snacks.

nettiebeads Apprentice
This leads me to another question - anybody else out there start out asympomatic?  How much time went by before you developed symptoms?  I am terrified of the damage I may be doing due to being glutenized without knowing it.  I'm pretty sure I am being contaminated by the simple fact that I have a 5, 3 and 1 year old - my 1 year old is always sticking his hands in my face, grabbing my food, etc.  My five year old makes her own PB&J and may not be careful, plus we are all new to this celiac-thing!  Teaching sharing used to be a big topic in our house, and now I can't share and the kids are having a tough time with this (especially my three year old who doesn't understand "gluten allergy!)  :(

<{POST_SNAPBACK}>

I went gluten-free nine years ago, but just recently joined this forum. I'm finding out that I may have been glutenized without knowing it many times. Sometimes I'm darned sure where the contamination came from - I would count back 24 hours from an episode of diarhhea and realize what I ate. Others here seem to get sick right away. Other times I wouldn't have the diarhhea so bad, but would get that crushing fatigue. And still other times I wouldn't get either one of those two, but get extremely irritable for no apparent reason, and would really have to fight that one. One of the "fun" peculiarities of celiac disease I suppose. But since I've been reading other posts and realized that I may have been contaminated, I've been very religous about washing my hands, surface areas, thrown away the wooden spoons, and it has made a difference. I never thought about kids sharing their food, but I do remember that with my daughter, but that was before celiac disease. Can they "share" with a doll or stuffed animal instead of you? Maybe you're not "hungry right now, but Lovey would love to have a piece" would work. Gloves, I can see you doing the housework with latex gloves. Or better yet, have your husband do it! Right. It does get so tiring of having to be on your toes. Oh yeah, we don't have little kids, but sometimes friends and relatives bring theirs. So I have Play-Doh on hand. And just found out from this forum that it is a gluten source. Something my husband did know and I didn't, but who cleaned it up when the guests were gone? Alway something

laurelfla Enthusiast
This leads me to another question - anybody else out there start out asympomatic?  How much time went by before you developed symptoms?  I am terrified of the damage I may be doing due to being glutenized without knowing it. 

<{POST_SNAPBACK}>

if the disease is something you are born with, then i was asymptomatic for about 24 years. i never considered myself as someone who had stomach/digestive problems, or really anything in the way of health problems. in may i woke up one morning and had diarrhea. it continued in the mornings, sometimes every few days and sometimes everyday. i felt pretty awful and couldn't figure out what foods were causing it. about a month later my doctor ordered a celiac blood panel and it came back positive. a few weeks later it was confirmed by biopsy. now that i look and feel so much better, family and friends are telling me that i actually looked pretty bad for a while there. it just seems to have come out of nowhere; no one in my family had ever heard of it, and i think the sheer fact of its sudden "appearance" is one reason i'm having a hard time dealing with it.

i'm also afraid of being accidentally glutened, but not because i live with others who aren't gluten-free, but because of my own ignorance! i'm trying as hard as i can to learn fast.

good luck to you.


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    • 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 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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