Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Lots Of Syptoms- Few Answers....


Jortyle

Recommended Posts

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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! :)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,021
    • Most Online (within 30 mins)
      7,748

    maltawildcat
    Newest Member
    maltawildcat
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • NanCel
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.