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Best Dr's Visit I've Ever Had


txplowgirl

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txplowgirl Enthusiast

Finally went to the dr and had a good visit. I have officially lost 30 lbs, YEAH! No more anemia, first time in 30 years. Dr told me I didn't need to take iron anymore. When I explained to him I went gluten free he knew about it and he told me if I wanted to take the tests I would need to go back on gluten and I said not no but HECK NO! He laughed at that. My vit b-12 and D was a little low so he told me to double up on those for a while. Everything else was ok, folate, magnesium, etc. He told me he wished more of his patients would do what I was doing. Told me to keep it up and come back in 6 months for another check up.

Now, I have found out that I am super sensitive I guess. I have a problem with about 90% of the gluten free foods out there. I get a reaction from almost everything including the gluten free chex cereals. AArrhhh. My favorite breakfast food. Here the other day my sweetie was eating a gluten sandwich and I was drinking a bottle of water. He reached over a couple of times and took a drink. I didn't think anything of it, DUH, a couple of hours later I was doubled up with pain and bloating, and diareha. I chewed him and myself out. I fixed him a sandwich and I forgot to wash my hands and sure enough a couple hours later sick as a dog. I would love for him to go gluten free but he won't. He tried for 3 days and he had gluten withdrawals so bad and he was in a lot of pain. So he went back to gluten. He understands the problems with eating it but he just can't seem to understand the concept of cc though.

He just dosen't believe it. Thinks i'm making it up. So i'm slowly educating him but sometimes I want to slap him up side the head. :P

Anyway, that's my update, It can be done, it just takes time and patience.

Everybody have a good weekend.


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Lynayah Enthusiast

Glad to hear the good news!

YoloGx Rookie

Not to be a spoil sport but if your friend went through gluten withdrawal pains it is not a good sign. He too may be at least strongly gluten intolerant. It indicates a gluten addiction if nothing else -- which is indicative of a strong sensitivity if not allergy or worse. Its not a good idea for him to stay on whatever he's physically addicted to for obvious reasons... Maybe he should get the test??

Glad you are getting on track in any case!

Bea

Dada2hapas Rookie
He tried for 3 days and he had gluten withdrawals so bad and he was in a lot of pain. So he went back to gluten...

...He just dosen't believe it. Thinks i'm making it up...sometimes I want to slap him up side the head. :P

Good for you! Sounds like you found a good physican. I helped enlighten a couple of them, as they didn't know celiac disease was so prevalent... I hate that--they should already know all this!

Now, about your sweetie. How do I say it nicely? ...I think go with the "upside the head" thing, but without drawing blood. ;) Did he really experience "pain", or is he just playing you, cause he thinks the pain you suffer from cc isn't real? Good grief, get a clue Dude!!

Jonbo Apprentice

I can't fathom how he doesn't believe you have Celiac when yet it seems like he's seen first hand what happens to you if you have some CC. You can't fake diarrhea and doubling over pain, etc...Well, you shouldn't be able to unless your damn talented :lol:

txplowgirl Enthusiast

Thanks everyone for the comebacks. Yes I have suspected for quite a while my sweetie has at least a gluten sensitivity. He has seen me at my worst before I went gluten-free and he does believe I have a problem with gluten and he goes out of his way to help me make sure I don't eat the wrong things. He just can't seem to see the need for a different toaster, pans, etc. He dosen't get it that gluten foods touching your food is a no no.

We had an argument here the other day over me eating a potato. I have a problem with nightshades too. He wanted me to eat a baked potato and I told him no, I didn't want to wake up hurting and swollen in the morning. He said, now get this. "One little potato won't cause you that much pain. You'll get over it a in a few hours, just don't eat more than 1 a week." He just dosen't seem to understand I was in pain from about 7 or 8 years old, I don't want ANY PAIN AT ALL!. Even a little bit.

As for him he admits he has a problem with gluten, eggs and milk. He refuses to give them up even though it messes him up. As he tells me. He's almost 60 years old. A little pain won't kill him. This is from a man with diabetes and had one heart attack. But yes when he went gluten-free he had pain so bad he couldn't hardly walk plus he would get shooting pains through his arms so bad he would yell and cuss. He definetly wasn't making it up. He even got so depressed the third day he cried. That did it. He went back to eating gluten that night. I've tried explaining about the possible cancer issues and other health problems but he just blew me off.

So, i'm at the point I eat what I want, he eats what he wants and I try to be extra careful. Sometimes it works sometimes it dosen't. But I do know that I am nearly pain free, no more depression, anxiety, asthma and I'm losing weight and I have some wonderful friends here on this website.

What more can I ask for.

YoloGx Rookie

If I were you I'd pray for that guy. What else can you do but let it otherwise go?? Too bad. He really should get some tests done. Its likely the diabetes results in part from the gluten intolerance. IIt sounds very likely he has candida overgrowth issues actually. But some people just can't handle going through what one would need to handle it. A competent doctor might be able to help him. Detox herbs would also help. But ultimately he would have to go through the initial withdrawal pains just like an alcoholic or druggie. I certainly was there, but was willing to endure it to have better health. Though for me it was change or die due to my kidneys etc.. maybe for him the motivation to change is not quite so apparent.

Bea


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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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