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So It's Serious...

Stef-Ani

By Stef-Ani
in Introduce Yourself / Share Stuff

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Stef-Ani Rookie
Stef-Ani
Posted

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
Nantzie
Posted

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
kbtoyssni
Posted

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
schuyler
Posted

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
Stef-Ani
Posted
  • Author
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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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
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      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
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    • Wheatwacked
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      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
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      By Scott Adams · Posted

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
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