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Doctors

natalieb

By natalieb
in Doctors

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natalieb Rookie
natalieb
Posted

I am 39 years old and suffered from undiagnosed celiac disease for 6 years. I finally got a good doc in pittsburgh who was able to dianose what my other gi doc couldn't do in 6 years. The problem is that I have soem nerve damage due to this disease. My gi doc recommended that I see a neurologist but he didn't give me a name. Needless to say, I found someone on my own and went to him today. It was a joke. You see, 4 years ago, I had a ct of my brain and there was calcification on my brain stem. Now that I know what is wrong with me I take no ones word. Due to the vision problems I have occasionally and the numbness on my left side (arm and leg at times), I wondered if all of this could be tied togehter. I stumbled across some research linking calcification of the brain and celiac disease. This doc today clearly knew nothing about celiac disease and the neurological effects of it. He is going to get my old ct scan of my brain and review it. That is, after he is done fighting with his contractor on the phone in his high glitz office in pittsburgh. I could clearly tell that he knew nothing about celiac. Can anyone recom. me to a neurologist that is knowledgeable with the effects of celiac disease or even knows what it is? I feel like I did 6 years ago when no-one believed in the medical profession that anything was wrong with me other than irritable bowel. Help please. natalie

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AntiGluten Rookie
AntiGluten
Posted

Sorry, I dont know of any doctors. But one thing I've definately learned from having this disease is that most doctors are idiots. They think they know everything and that whatever they say can't be wrong. It makes me mad that medical schools in this country tell these people that celiac is so rare that no one that comes into your office can possibly have it. Luckily I had a good doctor that keeps up with current research and tested me the first time I saw him. That is very rare with this disease. I think its a conspiracy of the prescription drug companies that keep this disease hush hush because it's misdiagnosed for so many things such as IBS that a magical little pill made and sold by these companies will make alll better. If the patient is told the truth and that all they have to do is simply change their diet then the drug co.'s lose a sale.

angel-jd1 Community Regular
angel-jd1
Posted

has anybody seen the commercial for that new drug Zelnorm. It is for women with IBS. It totally lists symptoms of celiac and then tells people to go get Zelnorm!! What a crock!!

Just my opinion!

-Jessica :rolleyes:

Guest jhmom
Guest jhmom
Posted

Zelnorm is for IBS with constipation well I called my regular doctor and her nurse told me they give it to their patients that have diarrhea!!!! Can you believe that? My GASTRO doc said that was a NO NO! Talking about clueless!

Also while reading online about IBS it stated that when IBS patients started a gluten-free diet, they improved WELL I WONDER WHY?

  • 1 month later...
Wish Newbie
Wish
Posted

I'm sorry to say that I don't know of a good neurologist. However, I'm from Pittsburgh as well and I'm not sure if you know this or not, but there's a great support group in the area. If you're not involved with the group yet and are interested, just e-mail me and I'll give you the contact information. I'm sorry you're having such horrible experiences with the medical community and I hope someone comes through with the information you need.

~Marie

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      By knitty kitty · Posted

      @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
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      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
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      Thanks for sharing this!
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