Please Help!

[nauseatingnancy]

Obviously, as many of you know and have experienced, becoming gluten free is a major lifestyle change. I am allergic to gluten as well, but since I found out recently, I have not developed Celiac, and with becoming gluten free now, I have hopes to prevent it. But we are new to this, and almost 2 weeks ago my mom accidentally consumed gluten. She has been sick ever since, almost as sick as she was before she was diagnosed. She is very restless and depressed as well as having extreme anxiety, and even paranoia. She also has headaches and backaches and weird sensations in her stomach. She also has tremors and chills at times, and diarrhea and acid reflux. Then when we take her to the doctor, they are no help!!! We were at the doctors last Wednesday and she treated my mom like she belonged in the nuthouse! I was infuriated!!! Then, on top of all that, they do blood tests and everything comes out normal. Perfect in fact.

Basically, what I would like to know, is if this is normal to have such a wide array of symptoms just from eating contaminated food? Is there anything, besides being more precautious with food, that will help her or does she just have to ride it out? Can she go see a doctor and just have them treat her symptoms to get over this?

I would really appreciate whatever feedback or advice anyone could give me, it really pains me to see my mother like this and feeling so helpless to change it.

[ravenwoodglass]

First welcome to the board. What your Mom is experiencing is not unusual. For some of us gluten is a neurotoxin and it can have nasty effects on the brain. It is also not unusual to have a more severe reaction after you have been gluten free. The body is trying to basically keep you from doing it again. There are some things she can do, first double check everything and make really sure it is gluten free. If she takes script or over the counter meds those need to be checked as well as supplements. Even tiny amounts of gluten can keep the reaction going. If she can stick to whole unprocessed food for a bit that will help prevent any 'accidents' while she is still learning what is safe and what isn't.

Sublingual B12 and some magnesium may help her feel better. Make sure the B12 is sublingual and gluten-free of course.

Pepto Bismal can help with the stomach pain.

Cream of Buckwheat cereal can be soothing to the stomach and is easily digestable if she likes it.

If she becomes worse, if she seems to be feverish or starts to look dehydrated and the D doesn't stop soon she should pay a visit to the doctor.

I hope she is feeling better soon and it is great of you to try and help. Ask any questions you need to and she is of course more than welcome to visit.

[nauseatingnancy]

First welcome to the board. What your Mom is experiencing is not unusual. For some of us gluten is a neurotoxin and it can have nasty effects on the brain. It is also not unusual to have a more severe reaction after you have been gluten free. The body is trying to basically keep you from doing it again. There are some things she can do, first double check everything and make really sure it is gluten free. If she takes script or over the counter meds those need to be checked as well as supplements. Even tiny amounts of gluten can keep the reaction going. If she can stick to whole unprocessed food for a bit that will help prevent any 'accidents' while she is still learning what is safe and what isn't.

Sublingual B12 and some magnesium may help her feel better. Make sure the B12 is sublingual and gluten-free of course.

Pepto Bismal can help with the stomach pain.

Cream of Buckwheat cereal can be soothing to the stomach and is easily digestable if she likes it.

If she becomes worse, if she seems to be feverish or starts to look dehydrated and the D doesn't stop soon she should pay a visit to the doctor.

I hope she is feeling better soon and it is great of you to try and help. Ask any questions you need to and she is of course more than welcome to visit.

Thank you so very much!!! It's greatly appreciated. My mom was talking as well about seeing an endocrinologist. Is that a helpful thing to do when you have celiac?

[The Fluffy Assassin]

Thank you so very much!!! It's greatly appreciated. My mom was talking as well about seeing an endocrinologist. Is that a helpful thing to do when you have celiac?

Many celiacs have thyroid problems, so an endocrinologist might indeed be helpful. Many celiacs also have an array of allergies; a visit to an allergist might be a good idea. Considering the lack of help and support you seem to be finding with the doctors she's seen already, you may want to post on the Doctors section of this board in hopes of finding a doctor in your area with a better grasp of celiac disease. (Or you can just search the board in case someone has already posted about one.) You may also find that there's a celiac support group in your area (post on or search in the Support Groups forum of this board) where people would hopefully know about better doctors she could see.

Seconding your welcome to the board, and I hope that her situation improves very quickly.

[mamaw]

Hello & Welcome

Some have already shared very good advice. Many of us suffer from allergies to other foods not containing per say gluten. corn,dairy, soy, nightshade vegeatables are a few of the things some of us have reactions to as well as gluten. These a simply allergies but cause many problems.

I would suggest a good digestive enzyme & also probiotics. B-12 as well.

Sad to say but doctors seem to think we are a tad wacko when we state our symptoms.

I have several autoimmune diseases & when things flare up I feel like I was in a train wreck, physical, mentally.....

Everyone experience is slightly different from anothers. I beleive one tends to feel worse before the healing journey. There are many ups & downs while healing.

Another thought is does she take medications? They sometimes can cause many odd problems that arent always listed on the side effects of the drug.

I hope everyone gets to feeling better soon.

blessings

mamaw

[mysecretcurse]

First of all, I can't speak for everyone, but in my opinion, doctors are of little help. I know some lucky members of this board have good, level headed docs who understand celiac but for the most part, doctors are.. (whats a nice word for stupid). I have a lot of anger towards western medicine in general because I, like many, was sick for YEARS, spent thousands of dollars on doctors, given infinite amounts of prescription stuff to treat my symptoms, and never once was it suggested to me that my problem could be related to something I was eating. Not. Once. I discovered it on my own.

Anyways, that aside, I'll try and answer your questions.

I would like to know, is if this is normal to have such a wide array of symptoms just from eating contaminated food?

Yes, absolutely. There are TONS of symptoms that vary greatly. It really can be anything. For me it's bad skin breakouts/rashes, horrible depression/mood swings/anxiety and in general just totally out there, irrational thoughts. When I get glutened I often have compulsive suicidal thoughts.. I was medicated for depression all throughout my teen years and I now think that a lot of it was related to celiac. But of course, like I said, I wasn't told that, I was simply fed some zoloft and told to deal with it. Aside from the skin and mental issues, I also get severely bloated pregnant looking stomach, constipation, and sometimes rashes and sores around my butt from the gluteny bm's coming out. Gross I know.

Is there anything, besides being more precautious with food, that will help her or does she just have to ride it out?

In my experience, you just have to ride it out. Of course you can always take good care of yourself and do things to make yourself feel better, but unfortunately there isn't a pill or anything to take that can suck the gluten out of your body once it's put in. Maybe someday someone will invent one, who knows. I know for me, smoking some bud helps a lot with the stomach pain + it lifts my mood, but I understand messing with marijuana isn't for everyone. Just a suggestion though, if you/she happen to be open to the idea. We had a thread about using pot for medicine here before... Other than that.. I like to take a bath, watch a film to get my mind off it, eat some really healthy gluten free food and visualize it healing my intestines (or just meditation/positive visualization in general).

Can she go see a doctor and just have them treat her symptoms to get over this?

Not in my experience. I personally don't mess with doctors at all anymore.

Also, someone mentioned thyroid-that is a good point. Earlier on in my healing, I was severely glutened (like, ate an entire plate of gluten food that I thought was safe) to the point where my thyroid like.. stopped functioning. I got really really sick and almost had to be put in the hospital and it took a long time of being sick in bed to even start getting better. Within the past 6 months of healing, I've noticed ALL my thyroid symptoms (constantly being freezing cold, extreme fatigue, etc) vanished. I feel like a new person, so the thyroid thing is without a doubt related.

[Lisa16]

You have gotten some good advice here so far. Doctors cannot help you if you get glutened. There is nothing they can do and it must just run its course. So if she gets some, I wouldn't run to the doctor for help. Running the bloodwork again is not helpful either. You already know she has celiac disease. And yes indeed, the effects of a single glutening can last for a couple of weeks easy.

Here are some things that help me when I get some:

lots of tea-- camomile, hibiscus, mint and regular teas. Sleepytime tea, for example, is nice. Read the labels. Lot of water too. You loose a lot of fluids when you get so sick like that. Avoid artifical sweeteners in things like pop.

an antihistamine helps me for some reason-- I think with things like swelling. I take benadryl.

a hot bath, hot water bottle or a heating pador a warm pet if you have one (cats are nice for this purpose)

a peaceful relaxing atmosphere-- a good novel, soft music, a bubble bath, hot tea... sitting outside and looking at birds, etc. Always in a few steps of the bathroom.

vitamins-- a good gluten-free multi and some of those mentioned above. Some of those might do wonders to restore her peace of mind. Make sure she gets D and calcium-- we are often short there.

some supplements/ herbs might help-- slippery elm, cloves (I just chew them), papaya enzyme, bromeliad enzyme. Some of these are thought to bind to the gluten and carry it off.

there is a product called glutenzmye that, in theory, will help bind to the gluen in the system and get rid of it. It helps me.

and for food-- keep it simple and ultra safe-- rice, fruits and vegetables, simple proteins. Don't east out for awhile so you can control things better.

And good luck! You will get used to the ebb and flow of this. Glutenings will happen-- no sense in worrying about them when they happen. Just do you best to avoid them.

[Korwyn]

Obviously, as many of you know and have experienced, becoming gluten free is a major lifestyle change. I am allergic to gluten as well, but since I found out recently, I have not developed Celiac, and with becoming gluten free now, I have hopes to prevent it. But we are new to this, and almost 2 weeks ago my mom accidentally consumed gluten. She has been sick ever since, almost as sick as she was before she was diagnosed. She is very restless and depressed as well as having extreme anxiety, and even paranoia. She also has headaches and backaches and weird sensations in her stomach. She also has tremors and chills at times, and diarrhea and acid reflux. Then when we take her to the doctor, they are no help!!! We were at the doctors last Wednesday and she treated my mom like she belonged in the nuthouse! I was infuriated!!! Then, on top of all that, they do blood tests and everything comes out normal. Perfect in fact.

Basically, what I would like to know, is if this is normal to have such a wide array of symptoms just from eating contaminated food? Is there anything, besides being more precautious with food, that will help her or does she just have to ride it out? Can she go see a doctor and just have them treat her symptoms to get over this?

I would really appreciate whatever feedback or advice anyone could give me, it really pains me to see my mother like this and feeling so helpless to change it.

Hi Nancy,

As a number of others have posted, yes this is normal. For me both gluten and soy produce almost identical reactions, though the soy is even more extreme. My reactions are extreme anxiety and panic attacks, depression, restlessness, RLS (Restless Leg Syndrome), muscle spasms (myoclonus) which sometimes start in my stomach (feels like a something crawling around inside!), and physiologic tremors. It takes me anywhere from 7 to 21 days to recover, depending on how much, and whether is was soy, gluten, or heaven forbid both.

As far as treating it, unfortunately you just have to ride it out. Lots of water, cleansing teas, but make sure they are gluten-free! A lot of teas have barley added or are cross-contaminated. Celestial Seasoning teas are all gluten-free except for one. They specifically label gluten-free. Also, I have found that eliminating all grains and refined sugars helps it pass quicker. Having only fresh veggies, some fruits, protein (meat/eggs), and rice milk during a 'glutened' period seems to help somewhat.

[runningcrazy]

Obviously, as many of you know and have experienced, becoming gluten free is a major lifestyle change. I am allergic to gluten as well, but since I found out recently, I have not developed Celiac, and with becoming gluten free now, I have hopes to prevent it. But we are new to this, and almost 2 weeks ago my mom accidentally consumed gluten. She has been sick ever since, almost as sick as she was before she was diagnosed. She is very restless and depressed as well as having extreme anxiety, and even paranoia. She also has headaches and backaches and weird sensations in her stomach. She also has tremors and chills at times, and diarrhea and acid reflux. Then when we take her to the doctor, they are no help!!! We were at the doctors last Wednesday and she treated my mom like she belonged in the nuthouse! I was infuriated!!! Then, on top of all that, they do blood tests and everything comes out normal. Perfect in fact.

Basically, what I would like to know, is if this is normal to have such a wide array of symptoms just from eating contaminated food? Is there anything, besides being more precautious with food, that will help her or does she just have to ride it out? Can she go see a doctor and just have them treat her symptoms to get over this?

I would really appreciate whatever feedback or advice anyone could give me, it really pains me to see my mother like this and feeling so helpless to change it.

We were at the health food store yesterday and I saw a thing called "gluten defense" it's an enzyme that just aids in the digestion of gluten. Of course, stay gluten free, but if your at a restaraunt or something and you get "gluten free" food and you aren't sure, just take it with, incase to atleast lessen the symptoms. But like said, avoid gluten at all costs though!

[nauseatingnancy]

I just want to thank you all very much for you wonderful advice! We felt so terribly alone with this and it is so nice to hear kind words and similar experiences. I'm sure a lot of you felt the same way at first. We have found a support group in Tampa so we plan on contacting them, I think it will be a great comfort to my mom to interact with other celiac sufferers and know that she can lead a normal life with just some changes in lifestyle.

My mom first got sick when her dog died unexpectedly of cancer. I heard trauma can trigger it. Anyways, at first we thought she was just depressed but then she got really, really sick and couldn't be alone. I switched to working overnight, after school. so I could be with her until someone got home. I go to nursing school and I did so much research at my school's library and asked all of my teachers but no one had a clue. However, my mom got diagnosed within three months of the symptoms first appearing, so I think we are very lucky in that aspect. I hate to speak ill of the doctors, for I am sure there are some decent ones out there, but our experience has just been very negative and kind of makes me want to get a medical degree and specialize in celiac instead of just doing nursing!!!

Again, thank you all so much, my mom was so happy when I told her how many people responded that she cried, so relieved to know she wasn't alone. We both thank you from the bottom of our hearts.

[shendler]

Basically, what I would like to know, is if this is normal to have such a wide array of symptoms just from eating contaminated food? Is there anything, besides being more precautious with food, that will help her or does she just have to ride it out?

I just ate something with gluten by accident and it is effecting just about every part of my body. I am very hot with a headache, stomach ache, joint pain, I'm nauseated, I'm disoriented..I just want to sleep for the next week! Then there will be the symptoms that don't appear until later on...fun

All you can do is ride it out.

[mom26boys]

You should definitely consider doing the med school route and specializing in celiac!!! There is certainly a need for doctors who understand and will actually listen to their patients instead of trying to fit them into some pre-formed parameters that they were indoctrinated with in med school. Sorry, I will get off my soap box now!!! I actually have a very good gp, who does listen to me, but prior to him, I've had some real winners for doctors over the years!!!

I'm new to all this but even in the short time I've known about it, I've experienced some of the things that the previous posters mentioned. I was off gluten for 2 weeks and I actually did the McCombs diet plan, which he recommends for his candida cleanse program. I didn't do the candida cleanse, but thought the diet was good and simple to follow so I did it. The first few weeks you only eat, meats, veggies, fruits (except oranges), and brown rice, as well as olive and coconut oils. As the weeks go on, you reintroduce foods slowly to see which ones you can tolerate. I could not believe how good I felt! Then when I found out I would have to eat gluten again for my endoscopy, I tried to only add a little each day, but even that was enough to send me over the edge! It helped me to realize how toxic any little bit of gluten is for me! I've been feeling horrible for so many years, that I just got used to it, I guess, and didn't realize until I was off of it, how horrible it was making me feel. I would recommend you mom follow a diet like the Mccombs, which is very similar to the diets described by the previous posters. Hope she is feeling better soon!

[sylviaann]

I just want to thank you all very much for you wonderful advice! We felt so terribly alone with this and it is so nice to hear kind words and similar experiences. I'm sure a lot of you felt the same way at first. We have found a support group in Tampa so we plan on contacting them, I think it will be a great comfort to my mom to interact with other celiac sufferers and know that she can lead a normal life with just some changes in lifestyle.

My mom first got sick when her dog died unexpectedly of cancer. I heard trauma can trigger it. Anyways, at first we thought she was just depressed but then she got really, really sick and couldn't be alone. I switched to working overnight, after school. so I could be with her until someone got home. I go to nursing school and I did so much research at my school's library and asked all of my teachers but no one had a clue. However, my mom got diagnosed within three months of the symptoms first appearing, so I think we are very lucky in that aspect. I hate to speak ill of the doctors, for I am sure there are some decent ones out there, but our experience has just been very negative and kind of makes me want to get a medical degree and specialize in celiac instead of just doing nursing!!!

Again, thank you all so much, my mom was so happy when I told her how many people responded that she cried, so relieved to know she wasn't alone. We both thank you from the bottom of our hearts.

Hi there,

I live in the Tampa area (east of Tampa-Bloomingdale area) and can relate to your frustration with doctors. I feel the same as you about a career helping celiacs. I grew up in Savannah and was raised in a "medical" family. In late 2006, I started experiencing myoclonus and worsening GI problems that were causing me great suffering. I saw approx. nine doctors (several in the Tampa area) before I had to research my dehabilitating symptoms and travel to Atlanta to see my former Celiac Physician (who is wonderful).

I had tested negative ten years ago but did not realize that my status could change. I have yet to find a decent doctor in the Tampa area (except an endocrinologist in Sarasota). Please feel free to contact me for support. I am super sensitive so I cannot eat most of the "gluten free' processed food without suffering myoclonus and GI problems. Hope to speak with you soon,

Sylviaann

[JNBunnie1]

some supplements/ herbs might help-- slippery elm, cloves (I just chew them), papaya enzyme, bromeliad enzyme. Some of these are thought to bind to the gluten and carry it off.

Please understand that I'm not trying to be annoying, just wanted to point something out for you. I think you were trying to say 'bromelain' enzyme, which is good for helping digest food. A bromeliad is a tropical epiphyte plant that people usually keep indoors as ornamental plants, not something you would eat. You can find bromelain/papain chewables at your health food store, they're usually quite tasty.

[nauseatingnancy]

Hi there,

I live in the Tampa area (east of Tampa-Bloomingdale area) and can relate to your frustration with doctors. I feel the same as you about a career helping celiacs. I grew up in Savannah and was raised in a "medical" family. In late 2006, I started experiencing myoclonus and worsening GI problems that were causing me great suffering. I saw approx. nine doctors (several in the Tampa area) before I had to research my dehabilitating symptoms and travel to Atlanta to see my former Celiac Physician (who is wonderful).

I had tested negative ten years ago but did not realize that my status could change. I have yet to find a decent doctor in the Tampa area (except an endocrinologist in Sarasota). Please feel free to contact me for support. I am super sensitive so I cannot eat most of the "gluten free' processed food without suffering myoclonus and GI problems. Hope to speak with you soon,

Sylviaann

Hi Sylviaann, it is nice to know there is someone in the tampa area who can relate. We are in New Tampa, off of Bruce B Downs. My mom is also super sensitive, we have decided to go organic because since she is still getting sick. Today is an exceptionally bad day, we have spoken to three of our doctors who are basically saying my mom is paranoid and is making herself sick. It's so frustrating!!!

[Lisa16]

Please understand that I'm not trying to be annoying, just wanted to point something out for you. I think you were trying to say 'bromelain' enzyme, which is good for helping digest food. A bromeliad is a tropical epiphyte plant that people usually keep indoors as ornamental plants, not something you would eat. You can find bromelain/papain chewables at your health food store, they're usually quite tasty.

Yes indeed, bunny! That is the one I meant. Good catch (not annoyed at all.) Did you know that pineapples are a member of that epiphyte family? I believe the extract is taken from that source (thus the mix-up.)