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. - knitty kitty replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

    2. - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

    3. - McKinleyWY posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

    4. - trents replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

    5. - Peace lily replied to AristotlesCat's topic in Super Sensitive People
      118

      Gluten Free Coffee

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

    • Total Members
      133,238
    • Most Online (within 30 mins)
      7,748

    tcpb
    Newest Member
    tcpb
    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

    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
×
×
  • 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.