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Newbie Anorexic With Neural Symptoms


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#16 sugarsue

 
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Posted 24 July 2010 - 04:49 PM

Do you have a history of strep infection? If so, please check out the possibility of PANDAS. There could be an association between celiac and pandas since both auto-immune conditions. PANDAS can cause anorexia, OCD, Tics, Tourettes and other neurological issues.

http://www.webpediat...com/pandas.html

http://www.latitudes...hp?showforum=17


Hugs to you and I hope you find the answers you are looking for.

Susan
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Susan
LYME diagnosed 11/2010, allergic to wheat, Hashimoto's Thyroiditis, allergic to all grasses, most trees, dust
Mom to 9 year old dd, lyme, diagnosed 11/2011, highly gluten intolerant, epilepsy w/ generalized seizures, mitocondrial markers, malabsorption, recurring candida - Gluten-free Casein-free since 9/16/08. Diagnosed with P.A.N.D.A.S. 6/20/09, seizure free since going gluten-free!
and 10 yr old dd, Lyme diagnosed 11/2011, severe dust allergy, allergic to most trees/grasses/weeds. Positive gluten intolerance testing. Gluten Free since 12/09/08. Diagnosed with P.A.N.D.A.S. 6/20/09

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#17 twinkle-toez

 
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Posted 25 July 2010 - 04:52 PM

My fiance and one of my closest friends thankfully. They were actually the ones who pushed me to give up on the challenge. :)
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#18 gf_soph

 
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Posted 25 July 2010 - 07:02 PM

Is it too weird to say I'm glad the gluten challenge gave you such clear (yet unpleasant) results? I'm glad it's given you the confidence to trust what your body is telling you, and that you have so much self-awareness to pick up on problematic thinking beofre hitting a full on replase. As much as I understand wanting a definite diagnosis, I have been sick enough years to know that a clear answer from a doctor is not always on the agenda. It's pretty likely you will get a false negative, I'm glad you're prepared for that.

Hope you bounce back from the glutening quickly!
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#19 twinkle-toez

 
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Posted 26 July 2010 - 09:37 AM

Definitely not too weird at all to say!!! I completely understand! Quite honestly, if I've found a solution to making all these symptoms better, well as weird as it sounds, I'll be ecstatic!!! (I'm reserving judgment until I've been completely gluten-free for at least a month, although I do feel better already, so it's a good sign.) So I'm really glad that I had the strong reaction that I did, and that I stopped when I did. Eating completely gluten-free will take some getting used to, but it will force me to add more 'scary' foods(in terms of the ED) into my diet (e.g. rice). It's kind of funny now that I think about it. I was fine to eat cookies, muffins, etc as a child, but eating those things as a teenager and an adult just sent me into utter GI chaos (massive cramping, gas, bloating, C) - so I"m wondering if whether my ED is intertwined with gluten somehow - not necessarily caused by it, but potentially exacerbated by it due to the physical feelings I'd have when eating 'normal food'.

And my fiance has gone from being totally doubting of it to be really really supportive - he's eating all the foods in the house that contain gluten that I once loved, and except for cereal, plans to join me (in a much less rigorous manner) on the gluten-free diet.
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#20 cwj-tlj

 
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Posted 12 September 2010 - 03:30 PM

Hi, I'm sorry if this has been posted before, but I'm curious for feedback.

I'm a 26 year old female with a history of anorexia nervosa. There is no celiacs within my family that I know of/ has been tested for, although my mother (biological) has severe rheumatoid arthritis. I however don't talk to my family, so if something was awry I wouldn't know.

I have some of the classic GI symptoms of celiac - bloating, gas, abdominal pain/discomfort - constipation, but never diareeah. I have these symptoms even when my ED (eating disorder) is in complete remission.

I have ALOT of possible neural symptoms... neuropathies affecting my peroneal and tibial nerves in my left leg for sure - possibly the sciatic in my left leg and my left arm. I get weird involuntary muscle spasms of my lower left eyelid, but they're not associated with any other visual disturbances. On two occasions I have had visual disturbances (blurred, double vision). I get severe headaches. I also have severe night sweats (menopause ruled out and sleep apnea under control) wherein I drench my pjs and the sheets. I also have alot of mood problems (irritability, depression). And about 6-8 months ago I had severe problems walking, although I'm not sure if my gait was exactly ataxic. And I have polycystic ovarian syndrome (so if I'm not on the pill I menstruate 2 or 3 times per year), yet I"m not diabetic or overweight.

All the neural symptoms began approx a month into my last anorexic relapse (I am currently at a stable and healthy weight and have been since April 2010). The neuropathies in my left leg have improved, but are still not nearly 100%. All the other symptoms have not improved. Does anyone know if celiac can be brought on by starvation/ anorexia?

My doc has ordered a serological screen, but I've been advised to wait a month and eat a heavily gluten-ated diet during that month to try and prevent a false negative. Additionally I"m getting a couple of CNS MRIs done at the end of August. If all my neural symptoms are still so pronounced, do I really need to wait a month to avoid a false negative?

Has anyone else had a similar experience? Even without the eating disorder? Can you get celiac without having a relative who has it?


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#21 11475

 
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Posted 23 September 2010 - 04:09 AM

I just signed up to be a member after reading this particular discussion topic.
Just wanted to share that I am currently gluten and dairy free but have a history of eating disorders.

I had a large number of family members who are also gluten intolerant, but had wondered if my previous anorexia had done anything to speed up my own problems with gluten. Whether it did or not; I'm glad you've decided to investigate. For over a year I'd thought my problems were just an extremely severe relapse (different manifestations of the ED, plus so many of the symptoms others have discussed), and that the inability to get out of bed/concentrate/stay awake etc was just because I was fundamentally lazy and this characteristic had only just decided to make itself known to me!

Two days after I began my gluten free diet trial I was convinced I was having some sort of placebo effect since everything started to feel so much better. After a few months - my eating disorder was well and truly back under control. I encourage you to continue to eat foods that make you feel good; the change I have noticed, especially considering my ED, is just amazing. Good luck to you.
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#22 Melissa85

 
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Posted 24 September 2010 - 04:00 PM

Definitely not too weird at all to say!!! I completely understand! Quite honestly, if I've found a solution to making all these symptoms better, well as weird as it sounds, I'll be ecstatic!!! (I'm reserving judgment until I've been completely gluten-free for at least a month, although I do feel better already, so it's a good sign.) So I'm really glad that I had the strong reaction that I did, and that I stopped when I did. Eating completely gluten-free will take some getting used to, but it will force me to add more 'scary' foods(in terms of the ED) into my diet (e.g. rice). It's kind of funny now that I think about it. I was fine to eat cookies, muffins, etc as a child, but eating those things as a teenager and an adult just sent me into utter GI chaos (massive cramping, gas, bloating, C) - so I"m wondering if whether my ED is intertwined with gluten somehow - not necessarily caused by it, but potentially exacerbated by it due to the physical feelings I'd have when eating 'normal food'.

And my fiance has gone from being totally doubting of it to be really really supportive - he's eating all the foods in the house that contain gluten that I once loved, and except for cereal, plans to join me (in a much less rigorous manner) on the gluten-free diet.


I'd be interested to hear an update on how you're doing. I have an ED history myself, and recently went gluten free after two months of symptoms I could not ignore, finally culminating in a terrible migraine. I have experienced eye twitching and numbness on the side of my hips, but it never occurred that this might also be connected. As a child I experienced stomach pains which seemed to have no cause, and I simply ignored as a normal part of life. I was also very anxious, tired, and experienced frequent brain fog. Most recently I sought out medication for ADHD to help me return to school.

It makes more sense now why I was such a failure in recovery programs, feeling so much more sick, my skin breaking out so much worse, and stomach bloating uncontrollably. I've brushed off many of my symptoms as ill effects from my ED. Likely I have exasterbated the problem by bingeing on wheat laden carbohydrates, and eating bran flakes as a breakfast staple. I began to take vitamins regularly this summer, but could not understand why, even as I ate so healthily, and did not purge, I continued to have terrible, embarrassing acne. As if having an eating disorder wasn't bad enough, I was irritable, tired, and isolating myself due to my embarrassment and low self esteem from my appearance. I often stayed home and put band-aids all over my face in order to prevent scarring. My family and friends all thought my acne was due to skin picking.

Two days after I stopped eating gluten, I could feel no remnants of the two month headache. I am relived that I don't have to worry about a return of the migraine I experienced. I thought I must be dying. There I was, trying to be normal, take care of myself and eat... so I ordered pizza, took a single bite, and was suddenly as ill as I have ever felt. I understand now why some alcohol makes me sick, tired, and puffy, while other kinds have no ill effects. I have treat food as medicine, and finally stop poisoning myself! I have no doubt in my mind that gluten is the culprit, and wish that Americans were better informed on the high rate of celiacs.
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#23 BenVenit

 
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Posted 24 September 2010 - 04:45 PM

I went through hell with eating disorders. It DID hit me neurologically. I was in so much agony and in treatment they made it worse. They made me eat so much crap it was not funny. I am disabled now, but doing my best. When I eat gluten I have terrible pain now because Iwent too long without a dx.

I am glad you caught it sorta early. I am older now. Has not been a happy life.
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#24 up late

 
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Posted 01 October 2010 - 12:42 PM

The antibody test can produce false negatives even in a coeliac eating gluten, it's generally the biopsy that's considered diagnostic with drs. There is more than one way to skin a cat however.

There is another blood test you can have that isn't diet dependent. It's the gene test, from memory there are 2 markers on the HLA strand of DNA that indicate a genetic suseptability. It's not conclusive but the gene test can identify if you are in a risk category for coeliac. If it's positive then you have a genetic predisposition (whether anyone in your family has been identified or not), means you are at risk of developing it but it doesn't mean you will, an illness/stressful event (such as anorexia) could trigger it however. If negative then it's highly unlikely you have or could develop coeliac. For what it's worth it might have some value as part of a bigger diagnostic picture.

Also there is a particular kind of rash some people with coeliac disease get (DH), it's specific to coeliac and if you're unfortunate enough to get it it can be identified through a skin test.

Then there are the complications such as vitamin deficiency and osteoporosis that can point to malabsorbtion, anorexia would make this irrelevant for obvious reasons unless you were cleared for them, are eating well and they have developed since.

There is also gluten sensitivity to consider, not coeliac but could mean you don't tolerate gluten well, it doesn't have the implications of coeliac but can give you the immediate symptoms such as bloating etc. Keep in mind too if you have not been absorbing or eating well for an extended period of time you may not be metabolizing well (starchy carbs in particular) and it's going to take some time for that to come good.

So as you can see it's quite complicated. On the one hand you don't want to eliminate potential sources of nutrition, on the other you don't want to eat something that will damage your health especially after having come so far in recovering. A gluten free diet is complicated, inconvenient, expensive and just a plain pain in the behind and you won't benefit from it if gluten is not a problem for your body. I'd recommend a long discussion with a sympathetic specialist familiar with both coeliac/intolerance and your own situation.
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#25 VioletRaven

 
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Posted 15 October 2010 - 10:51 AM

I just signed up to be a member after reading this particular discussion topic.
Just wanted to share that I am currently gluten and dairy free but have a history of eating disorders.

I had a large number of family members who are also gluten intolerant, but had wondered if my previous anorexia had done anything to speed up my own problems with gluten. Whether it did or not; I'm glad you've decided to investigate. For over a year I'd thought my problems were just an extremely severe relapse (different manifestations of the ED, plus so many of the symptoms others have discussed), and that the inability to get out of bed/concentrate/stay awake etc was just because I was fundamentally lazy and this characteristic had only just decided to make itself known to me!

Two days after I began my gluten free diet trial I was convinced I was having some sort of placebo effect since everything started to feel so much better. After a few months - my eating disorder was well and truly back under control. I encourage you to continue to eat foods that make you feel good; the change I have noticed, especially considering my ED, is just amazing. Good luck to you.


Thank you SO MUCH for starting this post Twinkle Toez!

Like 11475 I too joined because of your topic. I have an eating disorder (anorexia though sometimes bulimic tendancies) but have become increasingly suspicious that I may have a food intolerance or IBS as well. I started to journal not just what I ate but any related symptoms and I think I may now visit my GP about it. I have been searching for info on self-diagnosis and as a random thought I just searched in case there were any others out there suffering both ED and finding they had to go gluten free. I'm glad I found this, thank you again.

Did either of you have problems getting the doctor to take you seriously, or just dismissing it as part of your ED? Obviously the desire to restict on food types is a huge incentive to be intollerant and I even worry myself that I am making it up in order to encourage my ED. The problem is, I find myself with symptoms even when I am trying to eat "normally" so it's not a pleasant experience and only makes ED seem more attractive. I would previously have blamed the symptoms on not being used to any food, but now wonder if it could be specificly gluten.

Anyway, enough about me I just want to thank you so much for posting.

Interesting fact for you, of the 4 people I have met in my life who are diagnosed celiacs 2 of them have eating disorders.
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