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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Generalized Akathisia, Pelvic Floor Dysfunction, Chronic Fatigue/insomnia, No Doctor Has Ever Been Able To Find A Possible Cause
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6 posts in this topic

Hi everyone,

 

This is the first time I've made a post to a forum like this. Similar to most people posting on these boards I've suffered from undiagnosable and chronic ailments that have severely damaged my quality of life. My main symptoms are neurological but I have reason to believe the root problem is dietary.

 

My mother recently had a bout with Breast cancer. She is in remission now, but the experience has made me want to make the most of my life. I have decided that it isn't enough to just trudge through life going through the motions. I want things to be easy for me like they seem to be for everyone else. I don't want getting out of bed in the morning to be a Herculean accomplishment anymore. I just want a chance, a fair chance to compete out in the world. I feel like I wasn't made for the world that I live in. I want to have a career and a family, but I fear without getting my health under control I won't be able to. It would be vert helpful if anyone said that my symptoms even sound familiar to them. I have been to doctor after doctor and very few have made any comments beyond "I dont know".

 

Basic history:

 

gender: female

height: 5'7"

weight: 113 lbs

BMI: 17.7

Age: 23

 

Main symptoms:

 

1. Traumatic birth: I was born about a week late at 11 lbs 4 ounces, a very large baby delivered naturally through a very traumatic birth (forceps were used). Within hours of my mother first holding me in her arms she noticed me moving oddly, as if I was shivering from the cold. This shivering can be seen on home video footage.

 

2. Involuntary movements and tics: My entire childhood I suffered from severe tics and involuntary movements. I could not sit still for the life of me. I mean I could barely sit for ten minutes to watch a cartoon, and when the commercials came on I would leap from my seat and run around the house in circles. As I got older I got better at holding my tics in, and I would come home from school after a day of holding all that excess energy in and release it by literally sprinting up and down the stairs in my house for hours at a time with little relief. 

 

3. Chronic fatigue: When I was 8 my grandmother passed away. Around that same time I felt that my tics had worsened, and I began to develop severe fatigue. The level of fatigue I reached is almost indescribable. A healthy person would only be able to reach that level of exhaustion after years of physical torture, and I say that understanding the full weight of that statement. I always thought that it was a coincidence that my health deteriorated so rapidly after my grandmother's death, but after reading that emotional upheaval can trigger dietary responses I'm not so sure anymore. 

 

4. Persisting chronic fatigue: I maintained that level of fatigue until I was a freshman in high school. The years between age 8 and age 15 were the worst of my life. I completely lost these years. I was so tired sometimes that I felt like I was hallucinating, and I would intentional hurt myself to know whether I was awake or asleep. It felt like no matter how much I slept nothing changed the way I felt.

 

5. Diagnosed with Akathisia at age 15: Akathisia is a term for a chronic inability to be still and a feeling of inner restlessness. There is always a precursor for this disorder such as heavy drug use or brain damage, both of which do not apply to me. It's been explained to me that my neurological problems come from deep within the brain. The traumatic birth I experienced would not have been sufficient to cause Akathisia. I would've had to have brain damage to the point that I would not be a functioning human being. However, I was medicated with Clonodine which helped me enormously. This calmed the excess electrical energy in my brain and allowed me to sleep better and get my tics under control.

 

6. Persisting fatigue and low body weight: After being medicated with Clonodine it was like I was being freed from a prison. I was still tired and not able to function as well as my peers, but anything was better than what I had been living with. The euphoria from making some progress on my health problems was enough to keep my concerns at bay for about 5 years. 

 

7. Pelvic floor dysfunction: After about 3 years of searching I diagnosed myself with Pelvic Floor Dysfunction. Intercourse is excruciatingly painful for me. This is because the muscles and ligaments of my lower abdomen have been inflamed to the point where they are tense and immoveable. Physical therapy has helped me a lot with this however my progress is slow and quick to reverse if I don't keep up with it, $200 a week for physical therapy and 20 minutes of exercise a day. I am so thankful I have the resources to pay for my doctors visits, but for someone like me who is working a full time job (and who has the added full time job of managing my various illnesses) that is really hard for me to keep up with. I certainly have some source of inflammation in my abdomen, I believe it's leaky gut.

 

8. Low weight: I am very skinny and always have been despite caloric intake or lifestyle. I've been told since I was 6 years old that I was shockingly skinny. Strangers feel compelled to comment on my weight and ask if I'm sick. Teachers and coaches pulled my aside in school to ask me if I had a problem with eating. At every turn my whole life people have iterated to me that I look sickly, pale, and anorexic. I managed to get my BMI into the normal range my senior year of college (yay, haha) by eating 8,000 calories a day, being completely sedentary, and with the help of an illegal appetite stimulant :)

 

9. Sinus infections and bronchitis: I would estimate prior to being medicated with Clonodine I got a sinus infection about once every six weeks and bronchitis twice a winter. After being medicated those numbers have about been cut in half.

 

10. Alcohol intolerance: I have never tolerated alcohol well but as I have got older its gotten worse. I used to simply turn a deep shade of purple when I drank, now I get nauseous and vomit almost every time I drink. 

 

11. Insomnia: I have always had troubles with sleeping, however I am at the point where I cannot sleep without deadening my nervous system. My body only sleeps when I take something that addresses the excess neurological activity in my brain with marijuana, klonopin, opiates, alcohol, etc. I can take heavy doses of sleep medication and not be able to sleep. 

 

12. Indigestion and diarrhea: I have diarrhea about four to five times a day and am always very gassy. I have gas pains sometimes that are so intense that it takes my breath away and I jump out of my seat in pain. 

 

13. Poor concentration and OCD: I can't concentrate on anything very well and I have obsessive racing thoughts constantly. 

 

14. Confusion and cloudiness of the mind: I constantly mess up what I mean to say. I often swap words within the same sentence. I often only say parts of sentences (ex: I meant to say "Where is he from?" but I end up saying "Where is he?"). I have identified this as a problem, however my family is reluctant to confirm this for me because they don't want to make me feel bad I think (more ridiculousness to deal with, although it comes from a good place). I will ask my mother if she notices me doing this and she'll say "that happens to everyone". But when I have a particularly bad moment of faltering with my words I'll ask my mother later what she thought about that incident and she'll respond by saying "I just said to myself you were having a bad day". (Confusion all around! Haha. I'm confused about whether or not I am confused, you gotta laugh at it sometimes!)

 

CONCLUSION:

 

If you've gotten to this point, thank you from the bottom of my heart for taking the time out of your day to try to understand whats wrong with me and offer guidance or helpful advice. It would be nice for someone to even say that they've been in my position. I've always assumed that I was the only human being on the planet walking around with a mysterious disorder called "Generalized Akathisia", but maybe I'm not and maybe theres something more that can be done to help me. At this point my family and close friends think that stress is causing the bulk of my problems, like I'm crazy and imagining this entire thing. I do think that stress plays a major role because every time my symptoms have worsened and health has deteriorated further this has been accompanied by a major stressor. But shouldn't I be able to handle stress the way everyone else does? Breaking up with a boyfriend and taking care of your sick mother are normal parts of life. What am I supposed to do? Move to a farm with no electricity and cut myself off from the world? 

 

ps: just ordered tests from Entero Lab, sample will be sent next week. 

 

Thoughts? Comments? Doctor recommendations in the Greater New York area? 

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You sound like you have gluten intolerance or celiac disease to me. Your symptoms surely suggest this anyway. IMHO

 

Have you seen a good Gastroenterologist for the constant diarrhea? You need to have a celiac panel done...pronto!

 

You can't really handle enormous stress if your body is not well, hon. This is not your fault and you are not imaging things. You can't "make up" chronic diarrhea.

 

I had many similar symptoms before diagnosis and the excruciating pelvic floor pain was one of them.I could barely walk or sit without pain.

I had to have special physical therapy for that condition. But I am fine now. The main reason it reversed was because I am no longer anemic and full of inflammation anymore from being deathly ill with untreated celiac. Honestly....all the PT in the world will do no good if your muscles are affected by inflammation from gluten exposure.

 

My GI doctor is Dr. William Gusten at Saratoga-Schenectady Gastro Associates. Not exactly NY City area, but he sure knows celiac.Jjust a suggestion.

 

 

P S. Enterolab tests are not valid tests for gluten intolerance, food sensitivities or celiac, despite what they advertise. 

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You sound like you have gluten intolerance or celiac disease to me. Your symptoms surely suggest this anyway. IMHO

 

Have you seen a good Gastroenterologist for the constant diarrhea? You need to have a celiac panel done...pronto!

 

You can't really handle enormous stress if your body is not well, hon. This is not your fault and you are not imaging things. You can't "make up" chronic diarrhea.

 

I had many similar symptoms before diagnosis and the excruciating pelvic floor pain was one of them.I could barely walk or sit without pain.

I had to have special physical therapy for that condition. But I am fine now. The main reason it reversed was because I am no longer anemic and full of inflammation anymore from being deathly ill with untreated celiac. Honestly....all the PT in the world will do no good if your muscles are affected by inflammation from gluten exposure.

 

My GI doctor is Dr. William Gusten at Saratoga-Schenectady Gastro Associates. Not exactly NY City area, but he sure knows celiac.Jjust a suggestion.

 

 

P S. Enterolab tests are not valid tests for gluten intolerance, food sensitivities or celiac, despite what they advertise. 

Irish Heart, thank you for the quick reply!

 

It's so nice to know that someone else out there has similar symptoms and that I might be on the right track. 

 

I understand that Entero Lab tests are not completely accurate in diagnosing celiac/gluten intolerance. But don't you think if my test results show elevated antibodies that's a clue to something? If I even remotely react to any food source I want to cut it out of my diet. At whatever the cost it is to my wallet, however complicated it makes eating meals, whatever. At this point I'm just looking for something to confirm my gut instinct (pun intended :) ) that I am reacting to several food groups negatively. I've come to the conclusion that through trusting my body, following my instincts, and becoming educated I am just as capable of diagnosing myself as any doctor (I would always remain under a doctors supervision, trust me I have an ARMY of doctors monitoring me). I diagnosed myself with Pelvic Floor Dysfunction and took myself to physical therapy. I feel like I may have to do something similar with regard to possible food allergies. 

 

I feel alone in the symptoms that I suffer from and alone in my search for a proper diagnosis. I think sometimes the only person you can rely on to take care of you is yourself. So if Entero Lab can raise some flags for me to guide me in the right direction I'll take it. It's not COMPLETELY inaccurate is it? 

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Yes, I finished your story.  Things sounded familiar to me and it grieved me to hear it.  I think you may be getting somewhere, though!.  I know that foggy fatigue feeling, and it was my companion for about 30 years.  Please do get all tests and I hope a definitive diagnosis. Then I hope you will  have a positive response to the gluten free diet.  I did!

 

I like all of the tests, which I have tried, that others on the forum are not for, However, I didn't try entero-lab stool test.  Some other tests I have done, I have found helpful.  We all have our own path, and I don't think it is one size fits all.

 

Best wishes to you and I hope you will be soon filling us in on your discoveries and improvement.

 

D

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What I don't understand is with all the doctors monitoring you why you don't get a legitimate Blood Test for Celiac followed up by an endoscopic procedure.  Not all Doctors are Celiac savvy.  You can ask for the full Celiac Blood Panel and get some answers very quickly.  If you test negative then you very well may have NCGI.  The Gluten Free diet is the remedy for both.  Your symptoms and issues are not uncommon for Celiac/NCGI.  You would want to know if it is Celiac or not tho because Celiac causes damage to the villi in the intestines but NCGI does not.  Many of your issues may very well resolve on a Gluten Free diet and then it will be much easier to find any other intolerances that might still be an issue.

 

I really so no purpose for doing the Enterolab test.  It really will get you no closer to a diagnosis.  See your Doctor about Celiac testing and go from there.

 

Colleen

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When I was in highschool I was a little over 5 feet tall and weighed 98 pounds.  I was eating four meals a day, including 2 school lunches at lunch time along with extra protein shakes and couldn't gain weight for nothin.  I was anemic, tired all the time, and looked like a twig.  I also had low blood sugar problems.  Once I was out of college, things evened out a bit - I had grown a few more inches (I'm about 5' 6 1/2" now) and was finally able to put on some weight - not really enough, but some.  I wasn't diagnosed with Celiac until just a couple of months ago (I'm 42 now) - so I'm not sure what was really going on with my body between college and now... but I can definitely relate to the low-weight, low-energy thing.

 

When you're either not absorbing the nutrients out of your food or your body is otherwise not dealing with food the way it should - depending on if you have Celiac, gluten-intolerance, and/or other food intolerances or allergies - it effects EVERYTHING else.  Hormones, brain function, emotions, absolutely EVERYTHING.  You're not you.  But I'm confident that you can be once you find out which foods your body is reacting to, and then give yourself some time to get your vitamin and mineral levels back to what they should be.  Try to look on the bright side - you're young and have a really good chance at a full and complete recovery.

 

You may also want to consider a thorough investigation of what foods you may be allergic to.  Even if you do have Celiac, there can be other things irritating your system too.

 

Good luck - hang in there!

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