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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

    2. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    3. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,411
    • Most Online (within 30 mins)
      7,748

    EBeloved
    Newest Member
    EBeloved
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
    • Wheatwacked
      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.