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Newbie Anorexic With Neural Symptoms
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25 posts in this topic

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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You can definitely have it! I lost about 40 pounds last year and everybody around me thought I had an eating disorder.. I did not have an eating disorder, but I refused to eat certain foods because they made me feel ill. I discovered on my own that I was sensitive. I don't have any relative who has this. In an effort to put on some weight, I tried everything, but the second I started eating sandwhiches or sweets, I blew up like a balloon! Going on a gluten free diet could possibly also help with a disorder! Even if the test says that you don't have celiac disease, you could still be sensitive to it.

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I definitely do have an eating disorder - definitely anorexic, hands down no question about it.

My fiance totally thinks that I'm imagining the association b/w myself and gluten, and he doesn't see how all my neurological problems can be related to celiac (he's only familiar with the classic presentation of it) - and I don't discuss GI related issues with him, or anyone really up until this point, so he was quite unaware of anything except that I have bad gas. Anyhoo, he hates that I"m doing all this research and 'self-diagnosis', but the docs are just so uneducated... Like when my left leg first went numb I went to a doctor and told them I couldn't really feel anything below my left knee and she responded with "hm, that's really interesting" but made NO attempt to figure out what is going on. Anytime I mention what I think is going on with me to anyone they just look at me like I"m crazy b/c they're only familiar with the classic presentation of the disease adn it's so frustrating!

Anyway, the neural stuff has improved in my left leg - my parasthesias are much less intense through my calf and shin. They're still present, but very much less intense. They're still intense in my left foot, but nowhere near where they used to be. Is it normal for neuropathies to seemingly improve even without eliminating gluten from the diet? I read that 'sporadic' neuropathies are common, but I'm not sure exactly what is meant by 'sporadic'.

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Does anyone know if celiac can be brought on by starvation/ anorexia?

More like the other way around!

Perhaps the following will be of some help to you:

http://www.celiac.com/articles/133/1/Gluten-Intolerance-Group-Annual-Educational-Seminar---Malmo-Sweden-and-Copenhagen-Denmark/Page1.html

http://www.celiac.com/articles/22013/1/Willem-Karel-Dicke-Pioneer-in-Gluten-free-Diet-in-the-Treatment-of-Celiac-Disease/Page1.html

I agree that Celiac seems like a good fit with your symptoms. Many experience constipation and not diarrhea. I read that only one in six has diarrhea and weight loss.

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It's hard to say with neuropathy. Celiac can definitely appear as a mix of GI and neuro symptoms, but it could also be malnutrition from your anorexia. B vitamin deficiencies can cause a lot of neurological problems. There are definitely celiacs with eating disorders, and many with depression and anxiety. Neuropathies do come and go. I've had sporadic carpal tunnel problems for many years.

You do need to eat a lot of gluten the month before a celiac blood test. Even on gluten, the test has a 20% false negative rate. After the testing is done, you can try the diet and see if it helps.

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I definitely do have an eating disorder - definitely anorexic, hands down no question about it.

My fiance totally thinks that I'm imagining the association b/w myself and gluten, and he doesn't see how all my neurological problems can be related to celiac (he's only familiar with the classic presentation of it) - and I don't discuss GI related issues with him, or anyone really up until this point, so he was quite unaware of anything except that I have bad gas. Anyhoo, he hates that I"m doing all this research and 'self-diagnosis', but the docs are just so uneducated... Like when my left leg first went numb I went to a doctor and told them I couldn't really feel anything below my left knee and she responded with "hm, that's really interesting" but made NO attempt to figure out what is going on. Anytime I mention what I think is going on with me to anyone they just look at me like I"m crazy b/c they're only familiar with the classic presentation of the disease adn it's so frustrating!

Anyway, the neural stuff has improved in my left leg - my parasthesias are much less intense through my calf and shin. They're still present, but very much less intense. They're still intense in my left foot, but nowhere near where they used to be. Is it normal for neuropathies to seemingly improve even without eliminating gluten from the diet? I read that 'sporadic' neuropathies are common, but I'm not sure exactly what is meant by 'sporadic'.

Yes, the symptoms can do exactly what you're experiencing. Celiac seems to obey no rules, which is why most sufferers get misdiagnosed, and the docs are mostly clueless.

I had a lot of the leg pains/numbness and so forth. They did come and go, and seemed to move from one part of the body to another. Eventually it got so bad I couldn't walk, and could barely hang on to things without them slipping right out of my hands. When I started taking magnesium, the pains, weakness and such were completely resolved in a matter of weeks. I also found B12 to be incredibly helpful. The weird thing is that this all happened long after I had been gluten-free! But since then I've learned it isn't so uncommon.

One thing for certain, is that no matter what any tests say, you should try the gluten-free diet and see what happens. You've got nothing to lose, and everything to gain. I've had so very many health issues clear up, I'm still amazed by it all. Nobody could tell me what was wrong. I figured it out for myself, basically by accident. There are many members of this board whom are self-diagnosed, including myself. Your fiance needs to familiarize himself with the nature of Celiac, and how those suffering often need to be very actively involved in resolving their health issues. Doctors are not gods, and they don't have all the answers. Drugs only treat symptoms, never the cause. I've read countless posts on this board from people who've had to go through dozens of doctors to find one competent enough, or have practically had to twist the doctor's arm to get them to do the right tests. Others simply give up on the medical system, go gluten-free on their own, and never look back. A change in diet doesn't require a doctor's order nor permission. Many pursue testing first because they want to be sure, and want proof they can show to family, or to themselves when they are tempted to eat gluten. Others just want to feel better, and don't care what tests say. It just depends on what you want in order to feel secure in your decision - so you won't question yourself later. Just keep in mind that testing is often inaccurate, and either way you should try the gluten-free diet and see what happens.

And of course, the fine members of this board are here for you. The knowledge and experience you have access to far exceeds that of most doctors.

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Firstly, thank you for those links Rice Guy.

I only ever first heard of celiacs in a very offhand way from a friend who's brother and mother have it last summer, so it was definitely the furthest thing from my mind when I went about searching for what could be causing my GI symptoms.

I really appreciate everyone's responses and feedback. Really really REALLY appreciate it!!! It's so overwhelming trying to sift and sort through this all on my own. The idea of my diet getting even more restrictive is a bit daunting, but the idea of a solution and a tangible reason and a way to feel better is VERY appealing.

Skylark, my neurological presentation has been assessed in terms of my eating disorder, but it just plain doesn't fit. Originally it was a physiotherapist whom diagnosed me as having an issue with my peroneal nerve - this would have fit PERFECTLY within the realms of being explicable by an ED. The peroneal nerve at the fibular head is very vulnerable due to it's location near the surface of the skin - in an emaciated individual the nerve becomes even more vulnerable, and things such as tight leg crossing in anorexics have been reported to cause peroneal nerve damage presenting as 'foot drop'. This explanation became obsolete when it was discovered that my tibial nerve was involved as well (not only could I not dorsiflex (peroneal nerve control) my foot, but I could not plantar flex (controlled by the tibial nerve) either. Then added into the mix was the sensory abnormalities that extend up into my left lower back, the abnormal patterns of weakness in my left arm and hand which are inexplicable by weight loss, the horrendous night sweats, and the twitching of my left lower eye lid. I've also been checked for vitamin deficiencies - the only one which I consistently test deficient for is iron (have since I was 18 years old). I supplement with Mg, Ca, a generic multivitamin, B6 and on occasion B12. I've seen a physiatrist and a neurologist who both believe that my neural symptoms are deeper than simply involving my ED.

Also Skylark, You said that I'd need to eat alot of gluten the month before the blood test - how much is alot? I've been avoiding bread and pasta for a couple of months now, although crackers are my absolute achilles heel... Is a slice of bread a day enough? I eat crackers regularly, probably about 20 a day, and I have bread intermittently - probably 2-4 times per week. Other than that I just ingest 'hidden' gluten (I eat ALOT of salad, and I know it's in the dressing, and I LOVE croutons)...I'm sorry if this sounds stupid or naive, I just really don't know. I know that I re-introduced gluten into my diet in a big way on the weekend (I thought I could just gluten-load over the weekend and get the test done Monday and be fine, but the lab tech advised me to eat gluten for a month) and I have felt so sick ever since - GI upset, fevers, headaches, alot of nausea, fatigue... I just don't know how much to eat of it. And while I agree that a diagnosis on a piece of paper isn't everything, I do know that it's the only way that I will definitively convince those around me that this is real. It seems that everyone I've tried to run this past responds with skepticism and disbelief, and I find that really hard to cope with. It makes me feel like I'm crazy.I've read in other peoples posts that one needs to consume 4 pieces of bread daily for 3 months prior to a blood screen... I find this really depressing and disheartening... Does anyone know whether it's truly a valid statement? My doc told me I'd be fine to get the test done so long as I was having symptoms, but based on what I'm now reading I don' tknow...

Okay, sorry for the rant...

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I bet half the people on this board have been called crazy at some point or another. A lot of us have skeptical relatives and family members. When they see the recovery, especially the positive personality changes that result from disappearing mood problems and anxiety, they often become very supportive. I do NOT have the piece of paper, as I went gluten-free on my own. Not only has my family moved away from skepticism, but my mother has gone gluten-free and her stomach feels better than it has in years.

I see why you are looking elsewhere for the cause of the neuropathy. By the way, ideopathic anemia is one of the stronger symptoms of celiac disease.

You never need to apologize for asking questions. That's why we have this wonderful board! Doctors have told other folks on this board to eat the equivalent of four slices of bread a day for at least a month to have a chance at positive biopsy/blood tests. My own said a "normal" amount of wheat, like a bagel or cereal in the morning and a sandwich at lunch or pasta for dinner. (I ate one sandwich, got sick for two days, and decided I really didn't need the tests!) I don't know how many crackers are equivalent to a slice of bread, but they'll do fine as a source of gluten.

Gluten challenge is really hard and not always a good idea. If you get very sick or especially if the anorexia starts to become a problem you can rethink whether you "need" a celiac diagnosis. To be honest, I'm a little concerned for you if your anorexia turns out to be a result of gluten intolerance. It would be terrible to have that flare up from a gluten challenge and lose a bunch of weight you can ill-afford to lose. It's totally fine to give up a gluten challenge and go gluten-free without a "formal" diagnosis if your body tells you loud and clear that gluten is a no-go.

By the way, if you were eating less gluten and felt better, and you are having all those symptoms eating it you're definitely on the right track. I'd suggest you also go dairy-free when you first go off gluten. Many, many celiacs don't tolerate dairy until their intestines have healed.

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Oh, this conversation has been SO informative--thank you, thank you.

I am so blessed to have found this board!

I am planning to do my blood checks and am supposed to eat gluten, too.

I'm not anorexic, but that sounds like a lot of food to me to have to eat to make sure I'm well-glutened for a test. I'm just going to try and make sure that I choose more glutenous foods when I do eat.

But regardless of the results, I plan to go gluten free.

What I don't like is that while eating more gluten again, I just do not like the way I feel at all. Like lack of focus for a huge thing and just feeling 'short' with my mood.

However, I was thinking it would be really hard to go gluten free completely. But if I can just remember how I feel now, plus all of these positive testimonies, it should help on the road to recovery.

I have tibial nerve issues (supposedly) and low ferritin (ideopathic anemia?).

So glad to have been in on this conversation.

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I definitely understand your point when you say that a gluten challenge isn't necessarily a good idea. What I think would be devastating would be to do the challenge full out, feel sick for a month, and then still get negative results. And possibly even more troublesome in my case, after the massive re-introduction of gluten this past weekend I've been left very ill feeling, nauseated and not wanting to eat. The problem this creates for me is that I don't know if I'm mentally strong enough to push through this and eat b/c I know I have to and should... My fiance has told me that I look smaller than I did at the beginning of the weekend and extremely pale, which isn't a good sign. I suspect my ballet teacher will say the same thing to me tonight. He's also suggested that I believe this so fervently that I'm making myself ill (more craziness for me I guess - but I hadn't read about the nausea and fever and all these symptoms following a gluten challenge, so how can I be making it up if I didn't know?! Gah!). Not eating, even if it's b/c I'm sick pulls cords inside my head... I feel thinner when I don't eat, and it's sooo hard to give that feeling up... So I think my best plan would be to try and do the gluten thing for a week, and if I feel like this during that period, to cut gluten out completely and see if I feel better. If I do, then I"ll go gluten free and say screw the piece of paper, it's not worth relapsing over.

And thank you for the advice about dairy -I had read people recommending being dairy-free as well, but I wasn't sure why - it however completely makes sense, especially given the inflammatory properties of dairy.

And thank you so much for taking the time to respond and talk to me about this! It's made a world of difference in my head!

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Okay, sorry for this, but is what I"m feeling right now a common reaction to a gluten challenge?

Nausea, GI disturbances, headache, fever, fatigue, complete loss of the desire to eat... (I realize for me that may be more complicated than for someone else, but dance means the world to me, and I can't even force myself to eat adequately for that right now). I can't help but hear the voice in the back of my head saying "you're imagining all of this, and b/c you want to believe it so badly, you're manifesting it"...

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Yes, you are having a VERY common reaction to gluten. I get the nausea and GI disturbances. I also get very tired and usually anxious. It feels like a "stomach flu" or "food poisoning" when I get glutened and sometimes I have to switch to rice and broth because my stomach just won't settle back down. There are people on the board who do get fevers; I don't run a fever myself but I'll get night sweats. Headaches are not one of my personal symptoms but it's a VERY common gluten symptom. It also does really sound like your not wanting to eat is gluten related.

The voice in the back of your head is one many of us have heard... You absolutely must listen to your body and trust your symptoms.

I think your plan is sound, although if you continue not wanting to eat you might want to cut the gluten out sooner. Like today. It almost sounds like your body is yelling "No more, please!" I'm a little scared for you. :unsure: I totally agree the gluten challenge is NOT worth it if you're relapsing and I would think any sensible doctor would too.

(And stop apologizing for asking questions! We LIKE answering them and helping other folks feel better. :lol: )

Edited by Skylark
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Okay, sorry for this, but is what I"m feeling right now a common reaction to a gluten challenge?

Nausea, GI disturbances, headache, fever, fatigue, complete loss of the desire to eat... (I realize for me that may be more complicated than for someone else, but dance means the world to me, and I can't even force myself to eat adequately for that right now). I can't help but hear the voice in the back of my head saying "you're imagining all of this, and b/c you want to believe it so badly, you're manifesting it"...

I know your relationship with food and appetite must be a complicated one, but I can assure you that gluten can cause a total loss of appetite in someone with no preexisiting ED. I used to enjoy food and am desperate to get my health back (which includes a full and nutritious diet), but I can go months without any appetite at all. It's like my stomach doesn't work anymore. I can eat a small breakfast, have a busy day at work, and not eat until the early evening and not have any feelings of hunger. Often in that state I ony registed feeling weak or dizzy instead of hungry. And it usually hurt to eat.

I remember thinking many times that I would give up food if I could feel well, as I had so little enjoyment at all. I would have stopped eating altogether if I could stop the symptoms. Luckily I had some good support and I was able to keep my eyes on the long term goal, but it made me see food in an adverserial way, and I wanted to stop eating. If it had such a hard effect on me, I can only imagine how hard it is on you.

I think you are being sensible in being very aware of the relationship between your appetite and your thoughts about thinness. I also think at some point there may be a time that getting the official diagnosis becomes less important than keeping you in remission from anorexia. Only you can make that call, but be assured that you won't be the only self-diagnosed person here.

While I totally understant the importance in getting a diagnosis if you can, you don't need a dr to try the diet and see how you go. No one can predict exactly how it will go, but with your history there are so many good reasons to think that a gluten free diet may be a massive benefit, even if the testing comes back negative.

Good luck!

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Just as an update, I've given up on the gluten challenge. I simply couldn't handle it. I ate my last bowl of cereal this morning and then went and got blood collected to do the serological screen. I know it will likely be negative, in my opinion likely falsely negative based on how eating gluten made me feel and think (all I could think about was death and how the world would be better if I had died when I was 17). And my weight was sliding - 3 pounds in 5 1/2 days doesn't sound like much, but based on the thought patterns that were accompanying it, there's no way I could have lasted a month without relapsing. I don't care that the results will likely be inaccurate, if I feel better not eating gluten, well then there's my answer. And I guess my physical and mental self became pretty obvious to the two people closest to me - both of whom are adamantly telling me to be rigid and not touch gluten, at least for awhile. Thank you guys for your support - it's very very appreciated!

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Welcome to the self-diagnosed club. :D I'm actually glad to hear you went back off gluten rather than giving yourself the chance to relapse. The thought patterns sound truly awful. Maybe gluten-free you won't have any more anorexic episodes. My bipolar cleared up, and good riddance!

I hope your fiance was one of the people who has become supportive. I know that was a big concern and having his support will really help you stick to the gluten-free diet.

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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.webpediatrics.com/pandas.html

http://www.latitudes.org/forums/index.php?showforum=17

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

Susan

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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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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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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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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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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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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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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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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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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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