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Help? What Is Wrong With Me?

bentleysmom

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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

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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. :(

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

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    • trents
      Accuracy of testing concerns

      By trents · Posted

      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
      Accuracy of testing concerns

      By McKinleyWY · Posted

      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!
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      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.
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