My Symptoms Aren't Classic, And gluten-free Isn't Enough... Anyone Else?

[Plyncie]

I'm 21 and just got diagnosed with Celiac disease just before Christmas. My story is odd, so I'm going to start from the beginning.

As a baby from about 6 months, (when my mom fed me rice and wheat cereal) I had terrible diarrhea. The GI they took me to told them to spoon carob powder( i think!) or somethign like that down my throat and lots of yogurt to make it stop. It never really did, until i was 3 and i suddenly got very constipated. Lots of doctors just said it was from being potty trained (but that didn't make sense even at the time) and the treatment was 2 enemas twice a day and a large dose of Senekot everynight. I was a miserable child.

All growing up, i've had all sorts of stomach aches, allergies, and odd-ball problems, and remained very constipated with pain in my lower abdomen.

When i was 14 I got these odd lumps on my feet and legs, and the biopsy showed signs of systemic inflamation. Test results for many autoimmune diseases came back negative, and once i started allergy shots for unrelated symptoms, the lumps slowly went away.

I got married and began my senior year as a math major when i was 20. About a month after the wedding, i got this odd pain in my shoulder muscles. No doctors knew why or what was going on, so they gave me pain meds an muslce relaxants. They didn't help at all, and it got to the point where i couldn't move my arms so that i couldn't get dressed, and i couldn't go to school. Also, my knee and my hip muscles hurt. So i didn't exercise at all for a few months, and at "comfort foods".... so i gained about 15 pounds.... And the foot lumps came back.

So i decided to go on a low-carb diet.. which incidentally rules out bread, pasta, and the like. I got miraculously alot better. So my doctor diagnosed me with celiac. That was just before christmas of 07, so since then i cut out gluten, but when back to a higher-carb diet. Most of my problems went away, but the constipation (pretty severe) and minor muscle pains remained.

I started looking into the Specific Carbohydrate Diet, wondering if maybe the carbs in certain foods i am eating are causing my problems.

My main question is this: Does anybody else have odd shoulder muscle pains, lumps on the feet, or severe constipation as symptoms of the celiac disease??

My other question, what is your advice, considering the gluten free diet isn't doing all of it? I could just go low-carb forever...but i don't want to if i dont' have to. Anybody have any ideas!?

~Valerie

[aikiducky]

You've only been gluten free for a month? That's too soon to say if gluten free is going to be enough or not. Healing all the damage may take up to two years, so you have hope yet!

Constipation is a common symptom of celiac, despite what doctors are taught. From people's stories here it seems to me that it often takes longer to resolve than diarrhoea does.

Have you been checked for vitamin deficiencies? I'm thinking that the muscle pains may well be from that. One thing you could try is taking some extra magnesium, but I know there are other vitamins and minerals that also can play a part. Oh, the magnesium might also help somewhat with constipation.

Hope this helps.

Pauliina

[pixiegirl]

Well at least you've found out that going gluten-free is helping. And like the above poster said..... you have not been gluten free long enough to get a real handle on it. Although I felt better on day 3 of being gluten-free it took months and months for most of my symptoms to go away.

However, I was never 100% better being just gluten-free. And so back to the doctors I went and finally got a biopsy and found out I have another autoimmune disease, eosinophilic gastroenteritis.. I had many allergy tests done and an elimination diet but finally found out what foods caused me problems and took them out of my diet. Now for the most part I feel fantastic.

I'm not suggesting you have EG I'm just making the point that a lot of us have other issues going on too. My suggestion would be to continue on gluten-free for a few more months and then if your not feeling a whole lot better to start making the rounds of the doctors again. But with your history I'd start with a good allergist...

Best, Susan

[lizard00]

Sorry to hear your life long battle But, at least it sounds like you are getting some relief.

Have you tried keeping a food journal? It's a bit tedious, but it could be very useful in helping you to rule out any other bothersome foods. There's a lot of talk on here about dairy and soy elimination being useful in the beginning. I have cut out dairy, too for a little while and I have noticed a difference. Seeing a reaction written down, when it happened, etc can really help in identifying what foods do what and how long reaction times are.

Also there are alot of ways to increase your fiber to help get things moving I started using Rice Bran- just add it to juice, or a smoothie or whatever. It's a little grainy, but doesn't have a bad taste at all. And it's pretty inexpensive and way better than a laxative.

Hope that helps a little and that you start feeling better soon!

Liz

[Carl's mom]

Sorry to hear about all of your struggles.

Before I went gluten-free, I had all sorts of muscle aches. They started in my legs and lower back. It was so bad that I couldn't sleep at night. The doctors just gave me muscle relaxants, pain killers and told me to stretch after I exercise. Oh, please, was my response...none of that really helped. I had difficulty getting dressed and couldn't tie my own shoes. I had several other symptoms of severe magnesium deficiency (constipation alternating with diarrhea, heart palpitations, anxiety coming out of nowhere, waking up at night, fatigue). The nutritionist that my son was working with recommended taking magnesium/calcium supplement several times per day. It helped. What helped the most was about 3 months without gluten!! She also told me that many folks with gluten-intolerance or celiacs have vitamin and mineral deficiencies that need to be addressed along with a gluten-free diet.

Good luck.

[mftnchn]

Just one more idea...check out the lyme disease thread on this forum. The muscle, joint, and maybe the lumps sound suspicious to me. There's a long symptom list at the beginning of the lyme thread.

I have lumps on my feet too, but not sure where yours are? I have a diagnosis for mine, which are restricted to hands and feet.

[hayley3]

I had a severe vitamin D deficiency but I'm not dx'd. I was misdx'd with lupus.

I also had the lumps in my feet and constipation so severe my poop would come out in pellets as small as rabbit poop sometimes. I thought I had gastroparesis it was so bad. I never had stomach trouble as a kid but I had my gallbladder removed at 24.

I hardly had enough energy to get dressed. I lost my job.

I've only been gluten free since Thanksgiving. The gerd symptoms I was having prompted me to try going gluten free. So far it is helping but I still have the muscle weakness and the bloating (although it is not painful, thank goodness).

I keep reading that nutritional deficiencies are at the root of all diseases, so I am hoping. My thyroid is getting better without medicine and the cornea doctor was amazed that my eye got better. Maybe it's a coincidence, I don't know.

I know that starch is supposed to increase inflammation and that's why the Specific Carbohydrate diet works. Giving up gluten also gets rid of the starch.

[Plyncie]

You've only been gluten free for a month? That's too soon to say if gluten free is going to be enough or not. Healing all the damage may take up to two years, so you have hope yet!

Constipation is a common symptom of celiac, despite what doctors are taught. From people's stories here it seems to me that it often takes longer to resolve than diarrhoea does.

Have you been checked for vitamin deficiencies? I'm thinking that the muscle pains may well be from that. One thing you could try is taking some extra magnesium, but I know there are other vitamins and minerals that also can play a part. Oh, the magnesium might also help somewhat with constipation.

Hope this helps.

Pauliina

Really!? i thought that most of my symptoms should have cleared up by now. Oh i did forget to mention that i get significantly worse after i eat rice or potatoes.

But that does give me hope!

As for vitamins, my doctor already ran a bunch of tests on that, and i'm fine. but i did start taking supplements anyway, and nothing changed.

Thank you!

[Plyncie]

I had a severe vitamin D deficiency but I'm not dx'd. I was misdx'd with lupus.

I also had the lumps in my feet and constipation so severe my poop would come out in pellets as small as rabbit poop sometimes. I thought I had gastroparesis it was so bad. I never had stomach trouble as a kid but I had my gallbladder removed at 24.

I hardly had enough energy to get dressed. I lost my job.

I've only been gluten free since Thanksgiving. The gerd symptoms I was having prompted me to try going gluten free. So far it is helping but I still have the muscle weakness and the bloating (although it is not painful, thank goodness).

I keep reading that nutritional deficiencies are at the root of all diseases, so I am hoping. My thyroid is getting better without medicine and the cornea doctor was amazed that my eye got better. Maybe it's a coincidence, I don't know.

I know that starch is supposed to increase inflammation and that's why the Specific Carbohydrate diet works. Giving up gluten also gets rid of the starch.

wow... your constipation sounds like mine. I'm sorry to hear about your troubles... I hope you figure out whats going on so you get better too!

I read a book called the Inflamation Diet (well skimmed it) and it bascially similar to the Specific Carbohydrate diet... any inflamitory foods were removed. According to that book, like what you said, all diseases are caused by what we eat, and therefore can be cured by what we eat...

[Plyncie]

Sorry to hear your life long battle But, at least it sounds like you are getting some relief.

Have you tried keeping a food journal? It's a bit tedious, but it could be very useful in helping you to rule out any other bothersome foods. There's a lot of talk on here about dairy and soy elimination being useful in the beginning. I have cut out dairy, too for a little while and I have noticed a difference. Seeing a reaction written down, when it happened, etc can really help in identifying what foods do what and how long reaction times are.

Also there are alot of ways to increase your fiber to help get things moving I started using Rice Bran- just add it to juice, or a smoothie or whatever. It's a little grainy, but doesn't have a bad taste at all. And it's pretty inexpensive and way better than a laxative.

Hope that helps a little and that you start feeling better soon!

Liz

Actually, I was planning on going out today and getting a little book to keep a food journal in. I thought it might help, because i feel like i always get worse after certain foods, but I can never be sure cuz my memory is so poor.

As for the fiber, I am scared of it! whenever i eat fiber i get very sick, and HORRIBLE stomach pains. About 2 weeks ago, i ate a fiber supplement because i was so backed up, and ended up having to go the hospital because i was in so much pain. Fiber always seems to make it worse... plus i think rice and potatoes are bad for me....

Thanks for your advice, I will definitely keep a journal, and maybe in that journal i can see exactly which "fibers" make me better or worse!

[Plyncie]

Well at least you've found out that going gluten-free is helping. And like the above poster said..... you have not been gluten free long enough to get a real handle on it. Although I felt better on day 3 of being gluten-free it took months and months for most of my symptoms to go away.

However, I was never 100% better being just gluten-free. And so back to the doctors I went and finally got a biopsy and found out I have another autoimmune disease, eosinophilic gastroenteritis.. I had many allergy tests done and an elimination diet but finally found out what foods caused me problems and took them out of my diet. Now for the most part I feel fantastic.

I'm not suggesting you have EG I'm just making the point that a lot of us have other issues going on too. My suggestion would be to continue on gluten-free for a few more months and then if your not feeling a whole lot better to start making the rounds of the doctors again. But with your history I'd start with a good allergist...

Best, Susan

You know you're right. I have had so much information in my head in the last month, i've gotten overwhelmed and forgotten alot of things.... My doctor actually mentioned that it is possible i have some other autoimmune disease also (it runs in my family) and that eating this diet should help either way.

They tested me for the obvious ones, and i dont have them, but then again my mom as "an unspecified autoimmune disorder" and my grandpa has a VERY rare one which i forget the name (but only 3 people in the US are diagnosed with it right now).

So it is very possible i have another one...but in that case i wonder what i would do? Oh well, as you say, i should wait longer and hope that the gluten free thing works after some more time.

Thank you for your reply!

[Plyncie]

Sorry to hear about all of your struggles.

Before I went gluten-free, I had all sorts of muscle aches. They started in my legs and lower back. It was so bad that I couldn't sleep at night. The doctors just gave me muscle relaxants, pain killers and told me to stretch after I exercise. Oh, please, was my response...none of that really helped. I had difficulty getting dressed and couldn't tie my own shoes. I had several other symptoms of severe magnesium deficiency (constipation alternating with diarrhea, heart palpitations, anxiety coming out of nowhere, waking up at night, fatigue). The nutritionist that my son was working with recommended taking magnesium/calcium supplement several times per day. It helped. What helped the most was about 3 months without gluten!! She also told me that many folks with gluten-intolerance or celiacs have vitamin and mineral deficiencies that need to be addressed along with a gluten-free diet.

Good luck.

I'm seeing my doctor again in a few weeks... I'll ask her to test me for magnesium deficiency! I hope thats it, cuz thats an easy fix. Also, I will continue gluten free and hope i continue to see improvement....

I'm sorry about your experience with muscle pain... I know how you feel! I've gone so many night in a row without sleeping. Amazing how Vicodin does nothing isn't it?

[lizard00]

As for the fiber, I am scared of it! whenever i eat fiber i get very sick, and HORRIBLE stomach pains. About 2 weeks ago, i ate a fiber supplement because i was so backed up, and ended up having to go the hospital because i was in so much pain. Fiber always seems to make it worse... plus i think rice and potatoes are bad for me....

My apologies for the fiber... I would be scared of it too.

I don't know too much about the Specific Carb Diet, but I do know it eliminates all grain and starches. I also know it really focuses on whole foods, which is never bad. I have only recently even heard of the diet and have given it some thought for myself, but haven't decided yet. From everything so far, I definitely don't think it could hurt.

[Plyncie]

Just one more idea...check out the lyme disease thread on this forum. The muscle, joint, and maybe the lumps sound suspicious to me. There's a long symptom list at the beginning of the lyme thread.

I have lumps on my feet too, but not sure where yours are? I have a diagnosis for mine, which are restricted to hands and feet.

Ok I'll go check that out. My lumps are always on spots of my feet that rub or take abuse. Usually the inside edge of my big toes, my heals along the edges, under or around my baby toes, or on top of my feet. Once i broke a toe in Karate, and even after the toe healed, a giant purple hard fleshy lump appeared and was there for years afterwards.

My lumps are very itchy, but NOT hives at all. They are inflamed flesh, but deep underneath the skin, so it almost seems like theres a grothn underneath. They also hurt, and when they get too big (like about 3 inches diameter, 1/4 inch high) i can't walk very well.

After i went gluten free, about a week later(but started getting better the day i stopped eating gluten) they all dissolved and haven't been back.

I never got any on my hands... when i was 14 i got some on my shins, but those never came back either.

[Plyncie]

My apologies for the fiber... I would be scared of it too.

I don't know too much about the Specific Carb Diet, but I do know it eliminates all grain and starches. I also know it really focuses on whole foods, which is never bad. I have only recently even heard of the diet and have given it some thought for myself, but haven't decided yet. From everything so far, I definitely don't think it could hurt.

:-D

I think I've come to a decision for the time-being. I will keep a food journal, and trust my gut instinct and what will make me feel sick or not. I won't count carbs, but i will keep in mind that the more carbs i eat, the sleepier i feel, and the more i retain water, so i will be moderate. I will check ALL labels still for gluten, and be a bit more careful when it comes to eating out. And no more foods that could be cross contaminated like rice cakes. (big deal, i hardly like that stuff anyway) I'll try to stay with whole foods.

I will take my vitamins everyday like a good girl, and remember that these things take time....

If the journal seems to say that a certain food is causing trouble, and that food is on the list of illegal foods on the SCD, i will eliminate it, and see what happens.

Also, since i've been eating more sugar and starches, my dandruff( which is really a yeast overgrowth on my scalp) and my eyebrow dandruff has gotten worse! I think really need to kill off that yeast.

Thankyou everyone for your advice and support! i feel much better now... especially knowing that there are others with similar problems... I was worried that my celiac diagnosis was wrong.

[KAG]

I never was diagnosed with celiac disease. I've had almost every digestive disorder, but not much of any other symptoms, except for acne which has gotten much better. I think that I have small intestinal bacterial overgrowth. Being gluten free helped many of symptoms, but not all of them. Getting rid of dairy got rid of more symptoms. I started the specific carbohydrate diet about 3 months ago and was able to figure out a few more foods that caused me problems. I have had constipation for as long as I can remember. Since starting SCD I now have normal bowel movements AND EVERY DAY!!!!!!!! I think that I am going through some detox at times, but I have never felt better. I do not count calories, or limit the amount of food I eat. SCD does focus on whole foods and processed foods are not allowed since they contain a lot of hidden ingredients. I plan to follow this diet for at least a year, but the purpose is to heal your gut (and get rid of bad bacteria and have a normal gut flora) and move on to other foods. Of course, hopefully not going back to all the bad foods (and never going back to gluten). It is tough having to prepare all the food you eat though. I think that SCD is tough to follow, but I had been through many many years of things not working first. You do have to give your body time to heal and one month is not a very long time seeing how many years you were poisoning your body.

[Plyncie]

I think that SCD is tough to follow, but I had been through many many years of things not working first. You do have to give your body time to heal and one month is not a very long time seeing how many years you were poisoning your body.

You're right... i'm glad i found this forum. it really helps me get some perspective on things... one month has felt like FOREVER to me, but you are completely right, I haven't given it nearly enough time.

I have a tendency to expect immediate results :-P

I can imagine how hard SCD would be to follow... so i don't want to unless i figure out i have to. How long after you cut out dairy did you start feeling better?

[KAG]

How long after you cut out dairy did you start feeling better?

I have made so many mistakes and have been to so many doctors that I don't remember way back when. When I first realized that food was making me ill, (and there weren't any doctors agreeing with me on this) I did many different things. And at this point I was on different medications because the doctors told me it was all in my head. After cleaning up my diet and eliminating gluten, I think that it took me a few years to actually feel better. Maybe I would have felt better sooner if I didn't eat any dairy. Also, I would go through phases when all I would eat for weeks would be rice and carrots. I didn't have this wonderful website to use as a resource. I tried different eliminations diets. But it did take awhile. Now if I have dairy, it usually takes 3 days until I feel better. If I were you I would at least stay off of dairy for a few months to see how you feel. Then you can add it back and see how you feel. (Wait at least 3 days in case you have a delayed reaction.)

I also juiced vegetables in the beginning to help me heal. I also tried to stay away from as much processed food as I could. There are so many additives in processed food, and they are not even required to identify everything they put in. I never used to realize why I could eat nuts but I couldn't eat the mixed nuts. I found out that the mixed nuts have a starchy coating on them.

I also want immediate results. Being sick has allowed to me to learn how to take it easy and enjoy the process. So, slow down and learn how to listen to your body and take care of yourself.

[Plyncie]

I also want immediate results. Being sick has allowed to me to learn how to take it easy and enjoy the process. So, slow down and learn how to listen to your body and take care of yourself.

Wow... Thank you for taking the time to tell me your story! and thanks for the good ideas too

I have a new inspiration to do well... Its easy to become narrow minded and sorry for one's self, instead of aspiring to the challenge to be healthy and happy! It helps to talk and hear from others about it so much.... more than i even thought it would.

:-D

[Lisa16]

I also had the shoulder pain you are talking about. It was inflamed and there were spasms and it felt like it was on fire or like I had been beaten badly. There were times when it was unbearable and it went on for years. I went to chiropractors and physical therapy and I would take NSAIDS and nothing would work.

After being gluten free, it is gone. It took less than 1 month. I hope everything else goes away for you too.

I found out I am also alllergic to nuts. Maybe there is something there....

Good luck!