[mollymcn]

has anybody had the experience where their celiac disease wasn't symptomatic until they switched meds to topamax?

[KimS]

Sorry, I don't have any exp. w/ T. Maybe somebody else does.

Going gf/df can resolve a lot of issues and reduce or eliminate the need for meds. What are you using it for?

[mollymcn]

primarily as a mood stabilizer for bipolar II (or cyclothymia, my psychiatrist and I are still arm-wrestling about the precise diagnosis). I was on Lamictil which made me much happier because it treated the pain of my fibromyalgia. At least, I THOUGHT it was fibromyalgia until my primary care doctor picked up that I had nasty abdominal pain and hand and foot neuropathy last month - and she said, AT YOUR AGE (grrrrrr) it could be celiac disease. So, not waiting for the blood test results because I was desperate, I put myself on a gf/df diet about 2 hours later and it was a Moses-type miracle - no kidding! But I realized that I didn't have the abdominal pain or neuropathy until I had started the topamax. My blood work came back negative for celiac but i absolutely hate to switch meds yet again for my bipolar. I've been on anti-depressants for 15 years trying to get the right balance, and i think i've finally found the right mix that makes me function well enough to work full-time. With the diet, I have lots of energy. But i'm a little scared of the topamax now, and I don't want to kick any nasty celiac disease stuff into overdrive. there's definitely IBS and stuff like that in the family.

[KimS]

The tests aren't really that accurate (from my reading). And from what I understand, if the test is negative but there's a positive result in symptoms/quality of life, then you should stick with the diet as strongly as any 'celiac'.

We are in this position here. No formal diagnosis but the slightest slip (even a contaminated desk for the children) and mood swings, improper sleep ability, sometimes stomach pain all return (among other things).

If the topomax is giving you grief or has gluten in it, I would guess that it will be very worthwhile for you to change. You might even get better results on some of the meds that didn't work for you previously because your system isn't having to be in constant 'high drive' just dealing with the gluten.

It sounds, to me, like your primary care doc. might just be more in line with your needs than the other one.

I be interested to know what you decide to do and am thrilled that you're feeling so much better already! We too, were amazed at the 'lift' that comes with being gf.

[jccgf]

Originally Posted by mollymcn

So, not waiting for the blood test results because I was desperate, I put myself on a gf/df diet about 2 hours later and it was a Moses-type miracle - no kidding! But I realized that I didn't have the abdominal pain or neuropathy until I had started the topamax.

I really don't know if Topomax could in any way be a trigger for celiac disease.

I checked my book on The Nutritional Cost of Prescription Drugs to see if I could find anything on Topomax, and what nutrients it may deplete, but I couldn't find it. Sometimes these depletions are the cause of some of the side effects, and you can compensate for them if you know what they are.

You may be experiencing side effects from Topomax. But, with your medical history, I'd definitely give a gluten free diet a trial of six months or longer, despite your negative blood work. Do you know what tests they ran, btw? Did they include the antigliadin antibodies? I explain why I ask on the Diagnostic Testing page of The Gluten File.


Here is what the PDR says on Topomax:
Topamax side effects

• Side effects may include:
  Abdominal pain, abnormal coordination, abnormal vision, agitation, anorexia, anxiety, appetite loss, back pain, breast pain, chest pain, confusion, constipation, depression, difficulty with concentration, difficulty with memory, dizziness, double vision, drowsiness, fatigue, flu-like symptoms, indigestion, language problems, leg pain, loss of coordination, menstrual problems, mood problems, nausea, nervousness, nose inflammation, rash, sinusitis, slowing of movements, sore throat, speech problems, tingling or burning sensations, tremors, weakness, weight loss

http://www.pdrhealth.com/drug_info/r.../top1541.shtml


The Epilepsy forum and Peripheral Neuropathy forum might be good places to ask about the side effects of Topomax, if you haven't.

Cara

[mrsD]

depletes bicarbonate. It can cause metabolic acidosis in alot of the
patients who use it.

Doctors received warning letters a while ago to monitor with blood tests,
their patients regularly.

[glenntaj]

--the side effect lists are not all-inclusive, just what the maufacturer is obligated by statute to include. Sometimes, some of the most common side-effects of drugs are not even mentioned.

In the case of Topomax, among the boards I frequent, many of the things listed there have been noticed by some users--especially the possibility of increased burning/stinging symptoms--but two that are not mentioned there are an increased propensity for glaucoma (though many opthamologists are quite aware of it), and decreased appetite/weight loss. In fact, Topomax is now being marketed as a appetite suppressing weight loss drug in some realms!

I think it's at least worth a discussion with the doctor and maybe a taper/trial period off the drug to see if it is contrbuting to the symptoms.

[KimS]

Originally Posted by glenntaj

Topomax is now being marketed as a appetite suppressing weight loss drug in some realms!

That is just ALARMING!!

Again, rather take a pill that could further inhibit your health status, rather than create a healthy diet to stick to for a lifetime of good health.

[mollymcn]

It's so hard when any choice is a bad one.
If I taper off the topamax, that leaves me with several weeks of low to no coverage for my bipolar depression, which is a mighty ugly and dangerous situation -- not just for me, but for my two children. And my job, which I am holding on to rather precariously. Switching meds isn't really a switch - it's a gap in meds. That's very scary.
On the other hand, sticking to a gluten-free diet is really a pain in the neck unless one absolutely has to do it. I looooove pasta and whole grains! sigh.
And finally, I don't trust any of my diagnoses any more! I don't know whether I really am mentally ill, or whether it's really just a digestive disease, or whether it's not a digestive disease and just a mental illness - I'm SO confused!
Skinny and confused and depressed. Feels like I'm 14 again and not 44. Either way - miserable.

[KimS]

Skinny and confused and depressed. Feels like I'm 14 again and not 44. Either way - miserable.

I know the feeling! I think we all do here, on one level or another.

It sounds like a med. switch is absolutely not in the cards for you right now. If you are comfortable with Topomax, then absolutely stay with it!

If I taper off the topamax, that leaves me with several weeks of low to no coverage for my bipolar depression, which is a mighty ugly and dangerous situation -- not just for me, but for my two children. And my job, which I am holding on to rather precariously.

I'm thinking that you need to get comfortable with what you're going to decide to do first. Don't take anyone's word for anything. Start reading and try to pick out one thing to do for yourself that won't be too challenging.

Taking things slowly allows you to re-evaluate yourself as you go, too.

Diet may prove to be the least precarious thing to change and end up being the most comfortable for you. It sounds like you just need some help and direction.

...sticking to a gluten-free diet is really a pain in the neck unless one absolutely has to do it. I looooove pasta and whole grains! sigh...

Being gf is not a pain at all, when your quality of life improves. It's actually a preferable way of life that many choose to practise because it is so much less trouble than the health concerns they used to deal with before going gf.

If pasta is your favourite food, get rid of all the gluten pasta and fill your cupboards with rice pasta instead.

Another thing that I would do is pick a couple of foods that I negatively react with and get rid of them completely. For me (and a lot of other people), it would be coffee and refined sugar.

Thinking of you and hope that you feel better soon.