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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
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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