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Lots Of Syptoms- Few Answers....


Jortyle

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Jortyle Newbie

Hi everyone!

I am in need of some help. I am a 26 year extremely active (at least I was) male. About 6 months ago I started not feeling well. Nothing specific to my stomach or digestive system, fatigue, anxiety, extreme hunger, foggy head, etc... I was being treated for a sports injury with some steroid medication (already feeling poorly before taking meds). A few days after taking the meds I began to feel extremely bad. Went to the doctor, checked my blood sugar and it was at 300. Immediately the doctor diagnosed me with Type 1 diabetes. It really didn't make sense to me at the time why they would ignore what I felt was an obvious reaction to the medication, and a second opinion (also from a PCP) diagnosed with Type II. So, I was put on Metformin, while taking Metformin, my blood sugars dropped like a rock. I was hospitalized with Hypoglycemia! My PCP said, "It is totally impossible for a diabetic to go Hypo on 500mg daily of Metformin." He still would not admit that I could possibly NOT have diabetes (HUGE EGO). I showed him my BS meter which reflected regular 30s and 40s after meals at which time I was diagnosed with "Hypoglycemia."- LOL I finally got to an endo who ran my A1C which came back at 5.3. She declared that I definitely do NOT have diabetes of any kind (following a glucose tolerance test) despite testing positive for "low" level of GAD antibodies... Unfortunately, despite my BS returning to "normal" my symptoms never got better and the fatigue, brain fog, anxiety, and a more specific recurring abdominal pain developed. Not to mention that I went from a healthy 6'1" 180 lbs to a scrawny 150 now... I went to the GI who performed a EGD and discovered some celiac like issues, lymphocytes >30, some flatening, and "chronic and severe" inflammation of my stomach. Apparently, the results were not specific enough to celiacs to diagnose, however, he felt there was need for further blood work, and allergy tests. Celiac panel should be back in two weeks. I have started a gluten free diet, two days in symptoms are still fairly severe. SO SICK OF BEING SICK AND TIRED!!! At this point I am sooo sick of listening to doctors who don't have a clue... Anyone else have something similar happen to them? About how long does it take to feel better once gluten free?

MANY THANKS!


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ravenwoodglass Mentor

Welcome, you are in the right place no matter what your blood tests results are so don't stop the diet if the results of those are negative.

As to the BS issue that has happened to me also. With myself I had gone to the doctor early on in diagnosis for help after a glutening. He pronounced me diabetic and pushed meds on me also. I refused them though but did a lot of BS monitoring and found the only time it was elevated was when I was glutened. I read later on that it is not uncommon for some folks to have high BS when sick.

As to how long before you feel better it can vary. Some of us will go through a withdrawl so you may be moodier for a week or so. It will pass. It will be best if you go with whole homecooked foods for a while to keep cross contamination risks to a minimum. Cutting out dairy is a good idea until you heal. Do take precautions in your kitchen to avoid CC, new dedicated toaster, replace scratched nonstick pans, strainers and wooden utensils.

If you are not someone who has cooked a lot at home do feel free to ask for hints for quick and easy stuff.

I hope you are feeling better soon and ask any questions you need to.

89Mirageman Newbie

I am a type 2 diabetic and I also take 500mg of metformin twice daily, that alone will make you feel tired. It makes me feel tired anyway. When I read that you took steroids and it made you feel worse my jaw hit the floor. I had an ear infection back in June and after several attempts to cure it with antibiotics they finally wrote me a prescription to take steroids for 5 days. Those were probably the worse 5 days of my life. I got extremely constipated (always had issues with constipation before that but never this bad)and had zero energy. My blood sugar shot up to 361 once but I was able to keep it under 200 for the most part while on the steroids since I was barely eating.

Since then I have found this site and have been gluten free for about 3 weeks now. At first I felt great but have been tired again lately. I worked really hard on Saturday outdoors and think I may have over done it. My leg muscles have been sore ever since. I just think my body is weak from years of not knowing what was wrong and its going to take time to heal. I decided today to cut out soy and lactose as well.

Honestly my trust in Doctors is pretty low right now as I'm sure yours are too. It seems they have the perfect cure for you 20 seconds after you enter their room. They are so quick to write you a prescription and ignore you when you try to tell them what you're dealing with. I'm sure there are some great ones out there, I just haven't met him/her yet. I can't believe they misdiagnosed you as a diabetic, well yes I can too.

lovegrov Collaborator

Assuming you have celiac, which certainly sounds like a VERY strong possibility, two days is definitely not long enough to feel significantly better. I remember sitting on my bed and crying because I was so tired of feeling bad and that was 5 weeks after I was diagnosed. You'll get there.

richard

Rose W Newbie

I'm 46, and for the past two years, I have NOT felt like me. Mental fog, fatigue - sometimes in the extreme, weakness, gut pain, weight gain, bloating, and more. Like you, I'm TIRED of being sick and tired! Since January, I've been to doctors, trying to figure out what is going on, but all I've gotten is basically "you're fat and middle-aged". Just 24 hours ago, I stumbled upon something about celiac disease, and I KNOW that's what is going on with me. Today, I started my gluten-free life! On Monday, I'm going in to the doc's and requesting all blood tests for celiac disease. So, as a fellow newbie to the realization that we're NOT going crazy, I salute you for being pro-active in your health!! Trust what your body is telling you. Doctors may be discouraging, and mis-informed. Keep looking for a supportive and informed doctor.

Do you know what my 'AHA' moment was yesterday? It was while looking at a listing of celiac symptoms, (of course, I had many of them), but one caught my eye. It was "Low Cholesterol because of mal-absorption". I have the lowest cholesterol that my doctor has ever seen! As well as low blood calcium, low iron and low blood counts. But no doctor I've seen has been able to explain why I have abnormally low cholesterol. When I went in last month complaining of extreme stomach pain, distention, and feeling bloated and 'full up', neither of the two docs caught on. But now I know, and I join you in taking charge of my health! :)

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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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