Does Endocort cause pain in your feet and legs?

[Tanya Lynn]

I have been on Endocort since July 19th still struggling with the dreaded D.,
I started noticing pain in my feet and legs for about week or so and the
pain is just getting worse. I have had a very stressful week this pass week.
I moved my Dad and Step-Mom down to Texas, had my son and daughter-in-law
and 9 month old grandbaby, come down to help with the move, they all
stayed at my house. It's been a crazy week. I really thought that I was just
pushing myself and that I needed to rest.

Today I went to my accupunturist and she said my body is extremely exhausted
and to go home and rest. I have been off my feet most of the day but they still
feel like needles are sticking the soles of my feet and my legs are on fire.

I don't know what to do at this point. I just started my third month of Endocort
and have been following a very strict diet of GF, DF, SF, EF. But the medicine
doesn't seem to be helping as quickly as I see it helping others.

I would appreciate any thoughts....

Tanya

[Gloria]

Hi Tanya,

If you aren't having any improvement even while being on Entocort, you either have an additional medical condition, or you have one or more food intolerances that weren't tested by Enterolab. The tests done by Enterolab cover some of the most common food allergies/intolerances, but they don't cover them all. Since you are intolerant to soy, you might also be intolerant to all legumes, for example. Legumes are all beans, including green beans and peanuts. You might try eliminating all legumes and see if you improve.

By maintaining a food diary, you begin to see a pattern between your reactions and the food you eat.
However, it's fairly difficult to determine which foods are giving you problems until you start having some good days along with the bad days.

We have another member, Pat, who wasn't helped much by Entocort and she had visited many doctors in her quest for remission. Recently that she discovered quite accidentally that she is intolerant to rice. Most of us consider rice to be a safe food, but sometimes we have to expect the unexpected with this disease.

I hope you can find some relief soon. I know it can be extremely discouraging when you don't see an end in sight.

Gloria

[tex]

Tanya,

I agree with Gloria, that another medical condition may be complicating the situation. As one who has experienced significant neurological damage, I'm concerned about the symptoms that you described, (for your feet and legs). Speaking from experience, those are the early symptoms of peripheral neuropathy.

Are you a diabetic? If so, you should inform your doctor what is going on, in order to nip this in the bud, if possible. If you are not a diabetic, then the problem may have been initiated by gluten, but in any case, if the symptoms are just now becoming significant, then the likely immediate cause is a vitamin B-12/folic acid deficiency. You should locate a vitamin B-12 supplement, preferably in the form of sublingual lozenges. Ideally, they should also contain at least 400 mcg of folic acid. A combination of 1000 mcg of B-12, plus 400 mcg of folic acid, (in sublingual form), is produced by several companies, I believe. They're designed to be dissolved under the tongue, where they will go straight into the blood stream, thereby bypassing any malabsorption problem that may exist in the intestines. You may need to use several of them each day, for a few days, in order to get those symptoms under control. Also take a good multivitamin that contains the B vitamins, and make sure that you are getting plenty of vitamin D3.

If the symptoms persist, you may need to ask your doctor for a prescription to a product called Metanx, which is a combination of megadoses of B-12, B-9, and B-6. It's designed to treat peripheral neuropathy due to diabetes, but I'm taking it to treat peripheral neuropathy caused by gluten.

I didn't know what those symptoms meant, when I started having them, but I certainly know what they mean now, after ending up with peripheral neuropathy.

This could also be part of the reason why the Entocort is not effectively stopping the D.

Please keep us updated on this.

Tex

[Bifcus16]

Hi Tanya,

Try doing some exercises to loosen up the muscles in your back and butt. If these are tight and restrict the nerves all sorts of nasty leg pain can result.

Lie on you back and bring your knees to your chest as a basic butt stretch. Then take your legs to one side while leaving your shoulders on the floor to get a spinal twist.

If you feel tension doing these than you possibly want to get into a stretching routine.

Can't hurt, might help, and drug free.

BTW, getting glutened makes my muscles tighten up. I presume it can do the same to other people.

Lyn

[ant]

Dear Tanya

I very much agree with what Gloria and Tex say. In addition to Gluten and Dairy I have also cut out all legumes (soy is a bean and therefore a 'legume') and nightshades (potatoes and tomatoes). I might try and reintroduce the nightshades one day...but not yet.


I also want to comment how I am still learning sooooo much on this board. Reading this post has reminded me that for about ten years before chronic D attacked, I had balance and sensitivity to light issues. Since going on the diet, these have now mostly gone.

Best wishes, Ant

[tex]

Reading this post has reminded me that for about ten years before chronic D attacked, I had balance and sensitivity to light issues. Since going on the diet, these have now mostly gone.

Those are definitely neurological issues, and almost certainly induced by gluten. Your osteoporosis problem didn't develop overnight, either - it's a time-dependent process, and it was also progressing during that period of time. I am convinced that you are a celiac, regardless of what medical tests might show.

If a doctor can't diagnose celiac disease based on your history, (how much more obvious does celiac disease have to be, before they can "see" it?), then the profession as a whole is rather "impotent", because of overly-burdensome constraints, and outdated policies.

Tex

[Tanya Lynn]

Gloria,

Thanks so much for all your advice. You mentioned legumes, I don't eat
any beans, peas, or any nuts. I have diverticulosis that was DX 5 years ago
and was to avoid nuts, whole corn, and seeds. So, I have avoided those food for awhile.
I did eat some green beans on Monday that could have contributed to this pain. I
also had corn cereal twice this week and its really cause a setback. So I'm going to
avoid corn for now. My diet mainly consists of rice... If I have to give up that
I just don't know what I will do...

I have been keeping a poo dairy but haven't really kept a food dairy, maybe it's
time now. Thanks, for your help.

Tex,

No, I don't believe I"m diabetic. I have always had low blood sugar when I was
tested. Also, I also look forward to your advice, thanks again for your concerns
for everyone here.

You mention it could be deficient in B12. I have been taking a B12 shots weekly, but
haven't been taking any folic acid. Should I take folic acid daily?

I didn't know that peripheral neuropathy can be caused by gluten. As I think about
what my Mom went through the last 10 years of her life, she had Neuropathy, the
dr.s could never determine why, she wasn't diabetic. They just gave her all sorts
of medicines to mask the problem. Since I have the double DQ1 genes, one from her,
she must have had peripheral neuropathy from gluten and never knew it... The last
few years she lived she could hardly walk...

I was thinking the pain was from the medicine, Endocort.

Lyn,
I will try to do the exercises you mentioned. Thanks....

Ant,
Thanks for your advice as well. I haven't given up potatoes or tomato sauce.
I have just about given everything up...

Again I want to thank everyone for your advice, I'm so thankful to have
found this place. Nobody else can relate to what we are dealing with.

My Step-Mom, (Bless her heart), she said that "If I didn't get any better,
that she was going to try to find me another doctor!" I don't even
like the one I go to now. I only listen to everyone here.

Tanya

[tex]

I also had corn cereal twice this week and its really cause a setback.

Was it labeled as a GF product? Most of the major brands of corn flakes contain barley malt, which is a source of gluten. The only GF major brand is Chex. Or course, there are other brands of GF corn cereal available in health food stores. Unfortunately, some of us seem to react to Chex cereal, also, for some unknown reason.

Injected B-12 should bypass the need for extra folic acid. Of course, if you have a folic acid deficiency, you would need to supplement. If you don't have a low red cell count, though, then you probably don't have a folic acid deficiency. Most multivitamins contain some folic acid, and some contain as much as 400 mcg, which is a full RDA. The reason why so many of us may be deficient, is because wheat flour is enriched with folic acid, but most GF flours are not enriched with it.

It certainly sounds as though your mother might have suffered neurological damage from gluten. Even today, all of the neurologists that I have been examined by, (3), had never heard of gluten causing peripheral neuropathy, before I mentioned it to them, and they doubted that it could be true. Of course, none of them could explain why I have peripheral neuropathy, either.

Tex

[Polly]

Hi Tanya, fellow double DQ1 person!

Can you describe the pain a little more specifically? Is it present all day and night? Does it keep you up at night? You said "burning" legs and "needles" in your soles. Is the burning a sharp or dull/achy pain? How far up the leg does it go? Does anything make it better? Worse? Are you taking any other meds? On a scale of 1-10, with 10 being the most, how would you rate your discomfort? Is it getting worse today? Did you do any unusual activities during your stressful past week? Is there any redness, swelling, itching, rash?

I sure hope you start to feel better soon.

Love,

Polly

[tex]

Polly,

I have no idea if this is what Tanya is feeling or not, but I will be interested to see her description. In my case, the burning on the soles of my feet, was only present on the portion of the skin that was actually in contact with the surface below them, and this often happened when I stepped into a slightly cool bathtub or shower, and started running warm, (not hot), water. I felt as if I were standing on a red-hot surface, and so the first few times it happened, I actually reached down and felt of the surface with my hand, to check it's temperature. It was always slightly cool to the touch, but the soles of my feet reported it as painfully hot. I noted that the soles of my feet were not unusually red, at the time. The tops of my feet didn't feel hot, but sometimes they were affected by paresthesia. This happened at various other times, also, and of course, I was wearing shoes or boots, on those occasions, but the most powerful effect was when I stepped onto a cool porcelain or tile surface, (noticeably cooler than body temperature). It didn't happen every time, though, just occasionally, and I could never figure out a reason.

I have a hunch that with peripheral neuropathy, since normal sensory perception is lacking, the pressure caused by my weight, on the load-bearing portion of my soles was sufficient to cause a nerve response, but due to the neuropathy, the nerves would somehow misfire, and cause the sensation of intense heat, rather than simple pressure.

Love,
Tex

[Tanya Lynn]

Polly (fellow DQ1),

I will try to describe as best as I can.

Yes, the feeling or sensation I'm feeling is all day and night. My balls of
my feet are constantly tingling and it sensation goes up to mid way of
my calves. If I'm on my feet a lot during the day, my feet just feel as if
their are on fire. I have been so busy the last week, just moved my Dad
here, so I've been unpacking and on my feet all day. Yesterday I wore
tennis shoes, and by 4 pm, my feet were burning so bad. I took my shoes
off and my feet aren't swollen, just red on the soles of my feet.

After being on my feet all day, then I start having sharp pains in the
soles of my feet... Like right now, it's just the tingling, just so uncomfortable.
To touch my toes, they are freezing, but in the evenings they are hot.

I only take Endocort, thyroid medicine, B12 shot, Vit. D, Flax oil,
bio-identical hormone cream, and in the evenings I take Melatonin 6mg,
to sleep..

I don't know what this is but I have had a very stressful week...

Thank you so much for all your questions, sure made me pay closer
attention yesterday.

Tex,

That's exactly what I'm feeling, just on the soles (balls) of my feet.
When I'm not on my feet, I only experience the tingling/quivering,
but if I'm on my feet all day, that's when the burning starts...The tops
of my feet are usually cool but the soles are red and burning.
So, I guess it's the pressure of being on my feet all day.

I'm trying to have a positive attitude but this isn't helping at all.
I just don't know what to do....

About the corn cereal, I just went and looked, it was Crispx, my daughter
bought it and I was out of my Rice Chex so I ate it without even reading the
ingredients, Malt flavoring and at the bottom it said, The corn used in this
product may contain traces of SOY....

Wow, what a dummy, I can't believe I didn't read the box.

Thank yall so much for always being here for me and everyone else.

GO TEXANS!!!!!

Tanya

[Polly]

Hi Tanya,

It does sound like you and Tex describe similar sensations. And it does sound as if it could be a peripheral neuropathy. Have you asked your doc about it yet? If the D is continuing and you have significant malabsorption, it might be that you need additional vitamin supplements, like the one Tex takes (Metanx). If the problem continues, you might want to consult with a neurologist, since there are oodles of reasons for these types of symptoms.

Stress can cause hyperventilation, which can cause tingling of the extermities, but most likely wouldn't cause actual burning. If you suspect this, breathe (rebreathe) into a paper bag for a while to see if the legs improve. Hypocalcemia (tetany) can cause foot/leg cramps, and the toes will often curl under with painful cramping, but this doesn't sound like what you have.

Please keep us posted. Let's hope it just goes away on its own.

Love,

Polly

[tex]

This may not have anything to do with anything here, but I thought I should point out that a vitamin D deficiency leads to hypocalcemia, FWIW.

Tex

[Tanya Lynn]

Polly,

Yes, I guess I forgot to mention that my toes have been cramping especially
at night when I'm in bed and it's usually when I point my foot. This has
happened several times in the last week or so.

I don't take any calcium at all. I read about Hypocalcemia and and found this:

The presence of chronic diarrhea or intestinal disease, such as is
observed with Crohn disease, sprue, or chronic pancreatitis, suggests the
possibility of hypocalcemia due to malabsorption of calcium and/or vitamin D.

I will start taking some calcium along with my other pile of pils today....

Thank you so very much for bringing this to my attention. You and Tex are
wonderful!!

Tanya

[Polly]

Mornin' Tanya,

Supplementing the calcium right now probably won't hurt and actually may help! Since you are still having lots of D, there is a good chance that you may not be absorbing calcium properly, as your research above indicated. Also, I assume you are avoiding dairy, which is usually the major source of calcium in the American diet. It may take a few days of supplementation to see improvement. Can you tolerate the juices (orange, grape) that are calcium-fortified? Please keep us posted.

How about an update on your MC? How long have you had D now? I don't know how much flax oil you are taking, but oils often contribute to D (mineral oil has long been used as a remedy for constipation). What is your diet like now? I think you are wise to eliminate corn for now - as a double DQ1 I can't tolerate it either.

Love,

Polly