• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Generalized Akathisia, Pelvic Floor Dysfunction, Chronic Fatigue/insomnia, No Doctor Has Ever Been Able To Find A Possible Cause
0

Rate this topic

6 posts in this topic

Recommended Posts

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? 

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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. 

Share this post


Link to post
Share on other sites

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? 

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
Ads by Google:


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!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,142
    • Total Posts
      939,890
  • Member Statistics

    • Total Members
      66,131
    • Most Online
      3,093

    Newest Member
    Larryx
    Joined
  • Popular Now

  • Topics

  • Posts

    • My son is 13 and we have been dealing with his unusual issues for years. By 3rd grade, he was The Hulk, breaking things, punching holes in walls and raging. He had depression, anxiety and panic attacks. His skin would have rashes or turn bright red and i didn't understand why (now i know it's salicylic acid added to conditioner, sunscreen, lotion, ect). We realized that dyes were a problem and cut those out. Little by little, we removed sulfur, sulfites, preservatives, salicylates (aspirin-we assume he will be allergic to this but he has never had it and we won't ever test it, most fruits, spices, veggies and honey), nitrates, soy sauce and many more. He lived on an all home made, special diet and he was better but not well. (We did the Feingold and Failsafe Diet but that wasn't enough). He was diagnosed with hypersensitivity to medication by 5th grade (tried anti-anxiety meds-big mistake). Consecutive doses of anything would get stuck in his body and then the real fun started, full body rash, suicidal thoughts, vomiting and my least favorite-hallucinations. He was in the ER for a fall from a tree and they gave ibuprofen and Vicodin. Within 30 minutes the rash spread up and down his whole body (including under the damn cast). The worst night of my life was trying to keep him from breaking his own cast off and talking him down from trying to hurt himself.                                                                                                                                                                                                                                                             We tested my son for everything and anything, hormones, vitamin deficiency (later found out they don't test for nearly enough to really know) and thyroid. Everything was normal but a mildly low vitamin D level. He was very unhealthy, he was sick a LOT, allergies were bad, asthma and he developed food intolerances out of nowhere. We did a gluten/dairy free diet (because his sister is gluten/dairy free) but it made no difference and his diet was already so restricted. We did a year long food journal and also found an issue with pork, apples, citrus fruit, cinnamon, ect.  I researched my kid like it was my job. We tried many vitamins and supplements and he had bad reactions to many of them. I finally found a man with several of the same gene mutations (we tested with 23andme.com) who's Dr. thought it was a PST-Pathway issue. We decided to try the protocol of vitamins, supplements and amino acids to see if it made any difference and OMG, what a difference. At this point, we didn't have a pediatrician that actually listened so I asked several doctors about the specific vitamin/minerals/amino acids and kept all the does to a child size dose.  We had always used epsom salts as a response to a reaction in something, not as a preventative measure. We now soak his feet twice a day in Epsom salt water (or in the bath), it gives him a form of sulfur that his body was missing and now he can eat anything he wants (except soy sauce but we'll gladly leave that out). He takes molybdenum everyday with magnesium/calcium and vitamin D3 (and when we stop that, panic attacks come back. Weekly he takes milk thistle (we tried L-Glycine but too much gave him terrible insomnia (like 3 days of barely any sleep) and milk thistle works just as well to keep his liver open and working it's best), B vitamins, Cod liver oil capsules with Vitamins A and D and liquid Zinc.  His personality changed on the L-Glycine in a more outgoing way but then in a manic, not himself way so that scared us. Since the supplements started (6 months ago), his anxiety and depression is gone (and it was really controlling how we lived). He would never talk to people before...he was diagnosed with selective mutism but we felt that was incorrect and he was just very shy. He never liked talking with adults. Now, there is no problem, he is not super chatty with everyone but all he adults in our family noticed immediately. He is ready to stop home schooling and start high school next year. He has become a responsible, sweet, calm and caring child. No more daily fights, no more holes in the walls, no more rage. Our daughter has anorexia and we have been very busy dealing with her behaviors and missed the daily vitamins on occasion for several days....old son comes raging back. It doesn't take too long to figure out the mistake and gets him back where he needs to be. We did some genetic testing with a neurologist who specializes in metabolic function and while he tested for some helpful issues relating to hypersensitivity to medication, I still got the impression that he thought it was a placebo effect. We have burned through many therapists, pediatricians, a neuropsychologist, a psychiatrist, a gastroenterologist and possibly this neurologist. I hate not being taken seriously because while they may not agree with my ideas, they have nothing to offer in return.   
    • Yep no fruit, juice, sugar, or grains like oatmeal. The sugars glucose, fructose etc. Are common causes of flares in some. Sugar free fiber like nuts, but butters, cocanibs seem to be great for me. Keto diet sugar free high fat, mostly over cooked to mush or blended works great for me......heck as a baker I had to invent low carb, grain free, starch free bread. Sorta lead to a god like revelation and business took off with diabetics and my bakery.
    • Gastritis was my initial diagnoses before finding out I had celiac. The pains from the gastritis were terrible. I had to wake up in the middle of the night to eat cause I felt nauseous. The Doc prescribed me omeprozole and antacids. I took the meds for about a week but I cured it mostly by not drinking and eliminated caffeine intake. Alcohol was one of the main causes for mine 
    • The UC is a whole different beast. I’ve been eliminating tons of food. Meat is definitely good to me. I can eat all the steak, chicken, and pork without problems. I agree that paleo would be great for me. I’m gonna look more into their recipes.  Have you had any problems with fruits and veggies causing flare ups? I make smoothies with mixed berries, banana, gluten free oatmeal, spinach, and a splash of juice. It seems to be a cause. Maybe it’s the high fiber? I’m not sure. That and caffeine. I’m having a hard time eliminating caffeine though  
    • Pain wise a glutening celiac gets me more central gut pain and much worse with sharpness, urge to vomit, gurgles etc. UC is more along the the outside edges of your abdomen from the sides, lower area around the belt line, and upper area right under the rib cage, and is more of a boat and pleasure pain like your intestines are huge feeling.  UC triggers alot more gas, and makes you want to lie down I get the urge to massage and press on the pressure areas as it seems to help.
      Timing wise Celiac glutening I notice within 20-60mins and main vomiting starts in 1-3hours after eating it. UC flare you get it like 4-18hours or later depending on transit time of your food. A glutening will normally result in both a celiac reaction and a later UC reaction. For me a gluten CC or consumption issue also causes neurological symptoms, this is not true for some people but for me I also have a gluten ataxia, so the anxiety, panic, fog, mind looping, numb hands, loss of coordination or straight up motor loss is definite sign for me. Others will have to keep track with a food diary to nail down there own as every person can have a slightly different reaction.

      I also find with UC I do not directly vomit, Sometimes with UC it can trigger constipation and if not remedied in 12-24 hours leads to m system backing up and vomiting. Celiac can also cause me constipation but there is a slight difference in where it seems to get stuck at first. Hard to explain but you can sort of feel it. Also I find a gluten celiac response will result in a week or more of constipation issues. Starting mid section then moving to the outside gut area and  but some people do not get these and get D instead. So this is not very reliable.

      UC flare ups for me with my damage also always have bloody stools, worse flare ups its not just streaks but clots. Red and Dark red show it is in the large intestines. If you get tar like black  and red it is either a sign it is way back in the large intestine or in the stomach or small intestine. This makes my Anemia SOO much worse. Imagine how you feel with the loss of blood coupled with inability to efficiently absorb nutrients like iron and magnesium

      Thing to recall is UC is mostly the large intestine while celiac is mostly the small, so symptoms and trying to get the feeling of where the problem is can help.  Also if you get a glutening expect to have the UC flare up right after the celiac flare up.

      NOTE it is hard for me to say still, on the exact details and clarity, it has been since june of last year that I had a major gluten consumption issue. UC I get more regular but without the direct comparison in a while my memory is a bit iffy. Just trying to recall those exact pains and feelings from that last time. Also UC seems to wax and wane in and out while almost always being present for months in the background you just feel a bit off in the gut. SO many triggers, I felt that for years I swear til I went to this keto diet and dropped all fruit, sugar, carbs, and grains. Could have been the anemia, but I think it was more of a combination of the inflammation, bleeding, gas, and just being uncomfortable.
  • Upcoming Events