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

Help? What Is Wrong With Me?

bentleysmom

Recommended Posts

bentleysmom Newbie
bentleysmom
Posted

Hi my name is Lisa and I just celebrated my 42nd birthday on Jan.16. I have been stuggling with something in my body for about 15 years. I just recentley been informed about celiac disease.(please forgive my spelling)

Let me just start off by saying that about 3 years ago I was diagnosed with a chronic disease called Fibromyaligia. I have read some postings that some of you suffer from this.

My systoms are practically the same thing some of you suffer from. Fatigue, muscle/ joint pain.no ambition for anything, I have to physically make myself do things only becase I know other people rely on me for those things. ( I wish they didn't)

I would just like to know. What is wrong with me. I have a friend that was self diagnosed with Celiac Disease. She changed her diet and feels wonderful. Some days I don't hurt. Other days I just wish I could stay in a dark room and not even get out of bed. I just want a life. Other symtoms are headaches, shakey feelings.nervous stomach/ IBS/ nausea/ just basically awful feelings of selfworth. Im desperate for some kind of help,and why hasn't my doctor told me of this. Why did I have to ask him if I had Celiac Disease.

Ive basically over a period of 3 years just settled on that I did have Fibro that I did't question anything else.

I am looking forward to some quidance and support. I am at my wits end. I just want to feel better,be happy,and for my doctor not to say. Lets try this medicine maybe what you are taking isn't working proper.

I have been on every different kind of depression medication that the drug companies provide.

I take pain medication. depression meds, thyroid medication, sleep medication.

Someone please help me.

Thank you all for your time and concern.

Bentleysmom

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Hi and welcome! I can identify with your symptoms. Celiac can cause anxiety and depression. I got to the point where I did not want to get out of bed in the morning. I no longer felt pleasure in anything I normally would enjoy. My physical symptoms were getting worse at the time, and I felt the same desparation as you do now. I had fatigue and muscle pain--as well as the digestive stuff. I had even sought out alternative medicine--a Kineologist told me that I should never eat wheat, oats, barley or rye. That's the first time anyone told me I should avoid those foods. A light bulb went off, and after 20 years of trying to figure out what was wrong with me, I did some research on my own. I took what little I knew to a gastro. and asked him point blank if I could have a problem with gluten. I was lucky--he listened and agreed I should be tested. I have been gluten-free for 8 months, and while I still have a ways to go--I'm better. The anxiety and depression are greatly reduced. I wake up most days feeling hopeful and the feeling of dread is rare--only when I have a gluten reaction does it come back. Don't wait for your Dr. to suggest a problem with gluten--he probably won't. A lot of Dr's would rather treat the symptoms with meds. and not try and find the cause. At this point, you could request the testing, or you could go 100% gluten-free on your own. If you want to be tested, do not stop eating gluten prior to the test--it will skew the results. If a test result is not important to you, you could begin the gluten-free diet now, and see if it helps--I bet it will! Check in here for any questions you have along the way. Let us know how you do :)

bentleysmom Newbie
bentleysmom
Posted
  • Author
Hi my name is Lisa and I just celebrated my 42nd birthday on Jan.16. I have been stuggling with something in my body for about 15 years. I just recentley been informed about celiac disease.(please forgive my spelling)

Let me just start off by saying that about 3 years ago I was diagnosed with a chronic disease called Fibromyaligia. I have read some postings that some of you suffer from this.

My systoms are practically the same thing some of you suffer from. Fatigue, muscle/ joint pain.no ambition for anything, I have to physically make myself do things only becase I know other people rely on me for those things. ( I wish they didn't)

I would just like to know. What is wrong with me. I have a friend that was self diagnosed with Celiac Disease. She changed her diet and feels wonderful. Some days I don't hurt. Other days I just wish I could stay in a dark room and not even get out of bed. I just want a life. Other symtoms are headaches, shakey feelings.nervous stomach/ IBS/ nausea/ just basically awful feelings of selfworth. Im desperate for some kind of help,and why hasn't my doctor told me of this. Why did I have to ask him if I had Celiac Disease.

Ive basically over a period of 3 years just settled on that I did have Fibro that I did't question anything else.

I am looking forward to some quidance and support. I am at my wits end. I just want to feel better,be happy,and for my doctor not to say. Lets try this medicine maybe what you are taking isn't working proper.

I have been on every different kind of depression medication that the drug companies provide.

I take pain medication. depression meds, thyroid medication, sleep medication.

Someone please help me.

Thank you all for your time and concern.

Bentleysmom

Guest nini
Guest nini
Posted

welcome, jersey said it very well, sounds like a lot of what I went through as well, depression, anxiety, fibromyalgia, on and on... most Dr.s don't think to look for Celiac because they were taught in medical school that it is so rare they would probably NEVER see it... They were taught wrong... other countries know this better, but for some reason the US has a problem with accepting Celiac as a real diagnosis.

ultimately it is up to you if you want to go spend time and money on testing (with the chance that you will get a Dr. that is not well informed about Celiac and you could get false negative results) OR you could take matters into your own hands and go 100% gluten free immediately and start seeing if your body likes that. I'm willing to bet you will start feeling better rather quickly, BUT it also takes an average of 2 years before most Celiacs are healed enough to REALLY see a difference.

CMCM Rising Star
CMCM
Posted

In the book "Wheat Free, Worry Free by Dana Korn, on page 95 is a long article by a doctor called "Why your doctor wont' test you for celiac disease." One thing this doctor mentions is that her only exposure to celiac disease was about 5 minutes out of 4 years of medical school in a class called Pathology. In this 5 minutes she was told that this "gluten sensitive enteropathy" was a rare condition, treated by diet, and that it classically appeared in the first 2 years of life as a short, malnourished Caucasian child with a big belly (the picture showed a starving 3rd world looking child). Since most doctors don't see celiac patients who look like this, and since this 5 minutes in medical school can be quickly forgotten, you can see why celiac disease isn't on the tip of a doctor's tongue! In this particle, she goes on to give the "Top 10 reasons your doctor won't test you for celiac disease." Very interesting article, and well worth reading.

The whole book is very interesting, informative and useful. Good reading.

The lesson learned is, don't trust your doctor to figure this out. If you do much research on the subject, you will quickly know more than your doctor on the subject.

Sorry state of affairs for a common condition, but that's the way it is right now. :(

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,917
    • Most Online (within 30 mins)
      7,748
    tiffanygosci
    Newest Member
    tiffanygosci
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Help I’m cross contaminating myself,

      By knitty kitty · Posted

      I followed the Autoimmune Protocol Diet which is really strict for a while, but later other foods can be added back into your diet.  Following the AIP diet strictly allows you digestive system to heal and the inflammation to calm down.  Sort of like feeding a sick baby easy to digest food instead of spicy pizza.   It's important to get the inflammation down because chronic inflammation leads to other health problems.  Histamine is released as part of the autoimmune response to gluten.  High histamine levels make you feel bad and can cause breathing problems (worsening asthma), cardiovascular problems (tachycardia), and other autoimmune diseases (Hashimoto's thyroiditis, diabetes) and even mental health problems. Following the low histamine version of the AIP diet allows the body to clear the histamine from our bodies.  Some foods are high in histamine.  Avoiding these makes it easier for our bodies to clear the histamine released after a gluten exposure.   Vitamin D helps regulate the immune system and calm it down.  Vitamin D is frequently low in Celiacs.  The B Complex vitamins and Vitamin C are needed to clear histamine.   Supplementing with essential vitamins and minerals boosts your intestines' ability to absorb them while healing.   Keep in mind that gluten-free facsimile foods, like gluten-free bread, are not enriched with added vitamins like their gluten containing counterparts are.   They are empty calories, no nutritional value, which use up your B vitamins in order to turn the calories into fuel for the body to function.   Talk to your doctor or nutritionist about supplementing while healing.  Take a good B Complex and extra Thiamine in the form Benfotiamine (shown to promote gut health).  Most B Complex vitamins contain thiamine mononitrate which the body cannot utilize.  Meats and liver are good sources of B vitamins.   Dr. Sarah Ballantyne wrote the book, the Paleo Approach.  She's a Celiac herself.  Her book explains a lot.   I'm so glad you're feeling better and finding your balance!
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure!
    • knitty kitty
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By knitty kitty · Posted

      Some people prefer eating gluten before bed, then sleeping through the worst symptoms at night.  You might want to try that and see if that makes any difference.   Several slices of toast for breakfast sounds okay.  Just try to work up to the Ten grams of gluten.  Cookies might only have a half of a gram of gluten.  The weight of the whole cookie is not the same as the amount of gluten in it.  So do try to eat bread things with big bubbles, like cinnamon rolls.   Yeah, I'm familiar with the "death warmed over" feeling.  I hope you get the genetic test results quickly.  I despise how we have to make ourselves sick to get a diagnosis.  Hang in there, sweetie, the tribe is supporting you.  
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thank you, a little expensive but glad to have this source. 
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      @knitty kitty  Thank you very much for the advice. I did the exam this morning, my doctor actually suggested me to take something called "Celiac duo test" in which I first do the genetic test and if it's positive, then I'll have to do the antigen blood test. I have to attend 1 month until my results are ready, so I have some weeks to increase the amount of gluten I eat daily. It will be hard because my health is not the best right now, but I also did a blood test to cheek my nutritional deficiencies. The results will arrive on Tuesday, so I can ask my doctor what should I do to control my symptoms and blood levels during this month. For now I'm resting and paying attention to what I eat— at least I don’t look like a vampire who just woke up, like I did yesterday. I'm still scared because is the first time I've felt this sick, but this is the right moment to turn things around for the better.  I realized that if I eat gluten at lunch I cannot finish the day properly, I become severely tired and sometimes my stomach hurts a lot - let's not talk about the bloating that starts later. Do you think is it ok to eat gluten just in the morning, like some cookies and slices of bread for breakfast? 
×
×
  • 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.