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So It's Serious...


Stef-Ani

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Stef-Ani Rookie

okay.. i was just diagnosed with celiac a few days ago and everything makes sense now. I went through some pretty bad years of feelin sick and also had some bouts of depression. My dad gets the same stomach pains as I did so we think that he has celiac too but he hasnt been tested yet. He said he will get tested.. but he doesnt really think its that serious. I've explained everything I have learned about the disease to him too. He just kind of shrugs it off and makes excuses to still eat gluten. I just don't understand why anyone would want to keep damaging themselves if they know they can feel better... I'm excited about this new diet and seeing how much better I can feel! Does anyone have any ideas as to how I can make my dad realize that this really is serious and that he should get it fixed now? The longer you leave it the more you damage yourself right? :unsure:


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Nantzie Collaborator

Yep. It's serious.

I saw your post buried down here on the third page. :D We've honestly been getting so many new people here lately that it's hard for us "Oldies" to keep up. Hope you're hanging in there okay and reading the archives. That's what I did when I first found out about my gluten intolerance. There's nothing that we haven't discussed here, so there's tons you can learn just doing that.

As far as your dad, unfortunately, there's not much you can do. I look at it like an addiction (gluten has opiate properties, btw) . You can't make someone give up gluten because it's harming them any more than you can make someone give up drugs or alcohol because it's harming them.

You could always just ask him to go to the doctor to make sure it's not anything more scary than celiac (or even something completely different like ulcers). My dad had stomach problems for decades. Took drugstore over the counter stuff. He died of stomach cancer in Dec 2004 (diagnosed in June 2004). I heard about celiac and gluten for the first time in September 2005.

I wish I would have known about celiac before because even if they didn't find celiac, maybe they would have found the cancer. An upper GI for ANY reason a couple years before his diagnosis would have made a big difference.

They haven't found a direct link between stomach cancer and celiac, so I don't want to scare you about that, but there is a definite link to intestinal lymphoma and many other diseases.

I would push your dad to just get a referral to a GI doctor to make sure there isn't anything else going on. Even if they end up finding celiac, and he gets an full official diagnosis with doctor's orders to go gluten-free, you STILL can't make him eat properly.

A lot of people I think avoid the idea that they might have a gluten issue because they don't think they could handle going without so many things. I have a lot of people in my husband's family who are like that. But I always make a point of bringing gluten-free goodies to parties. Now, they're cool about it. I've even had a few family members ask me more about it. So they're getting there. In fact, as I was writing this, my MIL called to ask me to make the pumpkin pie for Thanksgiving. Which is the best compliment! (Gluten-Free Pantry Pie Crust)

The best (slightly sneaky B) ) tactic is to work on finding good gluten-free versions of his favorite things. That's how I dealt with my own gluten-free transition too. You just work on replacing one thing at a time, and before you know it (less than a year later for me...) you're pretty much eating how you used to. It just happens to be gluten-free.

Welcome to the boards!

Nancy

kbtoyssni Contributor

You could also ask him to read some books on celiac (and tell him it's so he'll understand your disease and be able to help you through this). Maybe he'll see himself in some of the literature. Try Dangerous Grains. That book is my favorite and talks a lot about the non-GI complications that can be cause by celiac. You can try getting it from the library if it's hard to get to a bookstore (I know when I was a teenager my parents never would have bought me a book unless there was good reason).

schuyler Apprentice

I wish I knew how to help with your dad. My dad's the same way. He has the same symptoms as I do, and he knows that since I have 2 copies of the celiac gene that one must have come from him (my mom was recently tested, and was negative). I think he knows deep down that he has it, but he doesn't want to admit it to himself. He is addicted to gluten. I have been doing more gluten free baking (since his favorite foods are things like cookies), and he's loved some of the things that I made recently. I'm hoping that once he sees that gluten free foods can be good, that he will go on a gluten-free diet. Hopefully...

Danielle

Stef-Ani Rookie
I wish I knew how to help with your dad. My dad's the same way. He has the same symptoms as I do, and he knows that since I have 2 copies of the celiac gene that one must have come from him (my mom was recently tested, and was negative). I think he knows deep down that he has it, but he doesn't want to admit it to himself. He is addicted to gluten. I have been doing more gluten free baking (since his favorite foods are things like cookies), and he's loved some of the things that I made recently. I'm hoping that once he sees that gluten free foods can be good, that he will go on a gluten-free diet. Hopefully...

Danielle

My dad is trying it! I found some really good gluten free cookies that i'm gonna give to him when I see him this weekend too... hopefully i will get him to like them and keep trying the diet... they are called kinnikinnick double chocolate almond cookies and they actually taste like real cookies..lol didn't know that was possible untlil now! good luck with your dad!

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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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