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jasmine4063

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jasmine4063 Newbie

Hello! I am 48 (almost 49 yrs old) and was diagnosed 3 years ago and remained in denial and then partial denial that it would go away. Well, it did not go away and the reactions are very disturbing. If I get wheat my lungs shut down completely. I was recently diagnosed Hypothyroid. I almost died twice as an infant and had growth problems. So, I was undiagnosed or misdiagnosed for 46 years of my life. :(

I decided to make my son some pumpkin/chocolate chip bars to take back to college today. Working with the flour made the sharp pain in my head come back and the allergy triggers start. It is so hard to cook for yourself and keep your family on a regular diet. I do not feel like it is fair to them to change them to gluten free. My son plays college football and I do not want him sick by drastically changing his diet. (suspicious that he is wheat intolerant) so what do you all do??????

Thank you!!!!


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luvs2eat Collaborator

Welcome!

Being diagnosed w/ celiac when my most favorite thing to do was to bake beautiful, crusty, country loaves of bread wasn't fair either... but it is what it is.

If your son is at all wheat intolerant, it's not only fair to offer a gluten free diet but it might make him feel so much better.

I don't know what to tell you about your symptoms using gluten ingredients. If it makes you sick then you shouldn't do it. Teach the gluten eaters how to cook maybe?

nvsmom Community Regular

I made my family go gluten-free. It was too much worry for me to keep bread and flour in the house. Plus i believe that the wheat we consume today is not good for them anyways.

There are a lot of gluten-free baking books and recipes out there that make really nice products. Even my pickiest eaters (elementary aged boys) are slowly coming around. My husband is also picky, but we do more corn, potatoes, and rice; and I always make leftovers so he can have warm lunches... he has barely noticed the difference... or he is being a good husband and not complaining. :) LOL

Good luck!

1desperateladysaved Proficient

"Well, it did not go away and the reactions are very disturbing. If I get wheat my lungs shut down completely."

Bad news:

I don't think you really have a choice. If you are having reactions like that, you could die! It can't be worth it.

Good news:

You can still bake yummy cookies for your son. There are many gluten free recipes on the internet. You don't even have to tell them they are gluten free.

I have mild reactions to airborne grains. I can tell you if and when it is in the room, but please don't try me. My family started off 5 months back totally unwilling, but they are starting to come around as they see what it does for us when I eat gluten free.

I hope all of the same for you-and safety. I am sure you can find food all parties will enjoy.

Diana

jlaw Apprentice

Welcome - it is really hard when it comes to family. But one of the factors in developing coeliac disease is genetic predispostion + a gluten filled diet. If your son has only a wheat intolerance now, by limiting his wheat intake you could actually prevent him from getting full blown coeliac disease. I'm speaking from personal experience - my mum looked after my wheat intolerance so well, baked everything from scratch long before gluten-free foods were available. But as soon as I was left to my own devices, I took the easy, wheat filled road. Now I have coeliac with a beautiful DH rash in everyplace you could imagine. And so now I'm also in the process of having to think about my own children...

It may be more fair to limit his gluten than to cook it for him. It is hard at first...but when you need help, come here. Lots of us to support. Plenty of recipes available on the net. Best wishes to all of you

MitziG Enthusiast

Would son rather have a healthy, living mom, or wheat filled goodies? I am guessing the former. And football or not, if he is celiac too, (which is likely) he needs to stop eating it. Unless you wish to explain to him down the road as to why his football career meant more than intestinal cancer.

Once you commit, and get over the hump, it isn't really a hardship except when eating out. Then its a pain. But at home, our whole house is gluten-free so the kids and I can be safe. And we eat very well. I make lovely muffins and cakes and cookies and breads that no one would know are gluten free. It takes more time, and there is a learning curve, but life is so much better now. Give yourself the chance to experience that.

Pegleg84 Collaborator

Hi Jasmine

Welcome to the forum! Hope we can all be of help.

From the sounds of it, you should definitely not be handling wheat flour, or preparing any gluteny foods for other people.

If your son or other family members want something you can't eat, ask them to make it themselves (which is a great chance to teach your son to cook and bake!) If they're baking in the house, it's probably better if you aren't in the kitchen at the time, and make sure everything is cleaned properly, they use different pans, etc.

Co-existing with gluten-eaters is possible, but you have to be careful: you need a separate toaster, cutting boards, pans... anything that gluten could be stuck to, you shouldn't be using.

So, if they don't want to cook for themselves, then they'll just have to eat gluten-free. (And your son should definitely get tested if he hasn't already).

Also, you can probably alter your baking recipes to be gluten-free as well, and just as tasty.

Good luck!

Peg


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    • 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 
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