Brand New - Been Reading Around, Still Have Questions

SaraMJ · February 3, 2011

Hello. I've spent the last few hours reading around this board, but I still have a few questions. I learned about Celiac Disease last night after googling some symptoms. To make a long story short, I have almost all of the listed symptoms of Celiac Disease. My story is very similar to most of the others I've seen on this board (stomach problems, migraines, joint pain, always sick, weight loss, bloating, constipation, gas, depression, vitamin deficiency, etc.). I've been sick constantly for the past three years, but I recently started experiencing a new symptom which is what sent me on my most recent google search. The skin on my left leg started going numb about a week ago. At first, it was a small patch and only seemed to affect the outermost layer of skin, but it's getting worse- now covering almost my entire thigh and going deeper. I saw that this can be a symptom of Celiac Disease - something I had never heard of - and I spent the last day scouring the internet for information (boy, is it overwhelming). I had an appointment with my PCP today and he quickly wrote off the numbness in my leg to a pinched nerve. After that I couldn't bring myself to ask about Celiac testing. I don't know why, but I just couldn't do it. I think I'm too scared of being told, yet again, that everything is fine.

I have a follow-up appointment in two weeks, so I'm definitely going to make myself talk to him about it then. BUT knowing that a gluten-free diet may help end this misery, I don't think I can continue knowingly eating gluten another minute. Just finding this information has made me happier than I've been in years. So that leads me to some questions...

1. Is it absolutely necessary to continue eating gluten until I can be tested?

2. I have severe GERD (saw that many of you do too), could these be related?

3. Do reflux/GERD symptoms get better on a gluten-free diet?

4. Has anyone experienced numbness related to Celiac Disease?

5. About how long does it take (on a gluten-free diet) before you started feeling better?

6. What symptoms were relieved first and which ones persisted?

I'm incredibly thankful that I found this forum. I've learned a lot from everyone here in the past few hours. I tried to read as much as possible before asking these questions, but there is so much information here!

cO-ol · February 3, 2011

1. Is it absolutely necessary to continue eating gluten until I can be tested?

If you're going to get the testing, yes. Some people just decide to go gluten-free without the tests, but if you start the diet before you get tested, you're more likely to get a false negative.

2. I have severe GERD (saw that many of you do too), could these be related?

In short, yes.

3. Do reflux/GERD symptoms get better on a gluten-free diet?

They did for me. I still deal with reflux, but it's much better than what it used to be.

4. Has anyone experienced numbness related to Celiac Disease?

I have. My hands and feet have persistent numbness, and everywhere else is just really quick to fall asleep.

5. About how long does it take (on a gluten-free diet) before you started feeling better?

I saw improvement in 3 weeks, but I've had a LOT of ups and downs. I'm on month 3 now.

6. What symptoms were relieved first and which ones persisted?

Anxiety/depression and heartburn have not gone away, but they're a LOT better. The numbness is still very much an issue, but my feet don't hurt so bad after being on my feet all day. I still have a lot of fatigue and brain fog issues.

mushroom · February 3, 2011

I saw that this can be a symptom of Celiac Disease - something I had never heard of - and I spent the last day scouring the internet for information (boy, is it overwhelming). I had an appointment with my PCP today and he quickly wrote off the numbness in my leg to a pinched nerve. After that I couldn't bring myself to ask about Celiac testing. I don't know why, but I just couldn't do it. I think I'm too scared of being told, yet again, that everything is fine.

Isn't it amazing how a whole medical appointment (that you are paying for!!) can be thrown off kilter by one disparaging remark from this medical 'expert'? How could he possibly know what was causing the numbness in your leg?? Possibly the same way that my mother's doctor "knew" that the pain she had in her right side was coming from her back, rather than from the ovarian cancer she actually had!! (for years). Not said to scare you, but just as an example of how doctors like to go the easy, obvious solutions first, rather than to press on to find the real answers. Numbness in leg?? Oh yes, pinched nerve - that's what my little, handy-dandy pocket reference guide says :lol: Of course I personally did have numbness from a pinched nerve, but the numbness was in my hand, and the pinched nerve was at my collarbone, not in my neck as the neurologist insisted!!! Numbness in arm/hand = pinched nerve in neck. Honestly, it's much too simplistic. That's why we are left diagnosing ourselves. I decided I had thoracic outlet syndrome from my research, but didn't realize that you needed a thoracic surgeon to diagnose it, and I was dealing with neurologists and orthopedic surgeons :rolleyes: I was right

Anyway, I do wish you could find a doctor that you could insist tested you for celiac disease. You may not in fact have celiac; you could possibly hand non-celiac gluten intolerance, but although many doctors don't recognize it as a legitimate condition, the treatment is the same and the cure is the same. So do be aware that pursuing the testing doesn't guarantee you of a celiac diagnosis even if you can't tolerate gluten But at least if you were tested you could carry on from there. Is there a possibility under your insurance of starting afresh with a new doctor? Because a doctor you can't even talk to is not going to help you a lot!

eatmeat4good · February 3, 2011

First, I understand being reluctant because they dismiss everything I say.

If you can't get a new Dr. then I say...

Hey, nothing wrong with a little white lie.

If you need courage and want them to take your request for testing seriously,

you can say you have some family members who tested postiive for Celiac.

After all, we are family now aren't we?

But seriously, do what you have to do to advocate for your health.

You could call and tell the nurse you forgot to ask the Dr. for some lab work at your appt.

Tell her you want a full Celiac Panel and you would like to do it as soon as possible so the results can be in by your next appt.

You might get lucky and the Dr. will order the tests and you go get the blood draw and you get results at your appt in two weeks.

If they ask why you want it tell them your main symptoms.

It's worth a call so you can get on to the gluten free diet.

My Dr. said to go gluten free and if it worked then I wouldn't have to pay for the tests because he would just tell me to go gluten free.

I didn't like the answer but it IS true.

I went gluten free and lost all the symptoms you described above.

I also had numbness in my arms...peripheral neuropathy...secondary to Celiac.

SaraMJ · February 3, 2011

Isn't it amazing how a whole medical appointment (that you are paying for!!) can be thrown off kilter by one disparaging remark from this medical 'expert'? How could he possibly know what was causing the numbness in your leg?? Possibly the same way that my mother's doctor "knew" that the pain she had in her right side was coming from her back, rather than from the ovarian cancer she actually had!! (for years). Not said to scare you, but just as an example of how doctors like to go the easy, obvious solutions first, rather than to press on to find the real answers. Numbness in leg?? Oh yes, pinched nerve - that's what my little, handy-dandy pocket reference guide says Of course I personally did have numbness from a pinched nerve, but the numbness was in my hand, and the pinched nerve was at my collarbone, not in my neck as the neurologist insisted!!! Numbness in arm/hand = pinched nerve in neck. Honestly, it's much too simplistic. That's why we are left diagnosing ourselves. I decided I had thoracic outlet syndrome from my research, but didn't realize that you needed a thoracic surgeon to diagnose it, and I was dealing with neurologists and orthopedic surgeons I was right

Anyway, I do wish you could find a doctor that you could insist tested you for celiac disease. You may not in fact have celiac; you could possibly hand non-celiac gluten intolerance, but although many doctors don't recognize it as a legitimate condition, the treatment is the same and the cure is the same. So do be aware that pursuing the testing doesn't guarantee you of a celiac diagnosis even if you can't tolerate gluten But at least if you were tested you could carry on from there. Is there a possibility under your insurance of starting afresh with a new doctor? Because a doctor you can't even talk to is not going to help you a lot!

Thank you for your response! My doctor is actually a very nice and caring guy. I don't think he would've turned me down for a test had I asked for one. But I was almost positive the numbness in my leg has nothing to do with a pinched nerve and when he said that, he totally threw me off.

Is it common to try a gluten free diet when you suspect you have celiac or gluten inolerance but your doctor doesn't believe or test you? I want to start right away! I still have a lot to learn, but all of this - the forum, the website, recipes - is giving me hope. I haven't had hope in at least two years. Another poster had a similar question, but is it necessary to be diagnosed by an actual doctor? I mean, are there prescription meds to take, special appointments, or anything?

mushroom · February 3, 2011

No, you do not need a doctor's permission or prescription to eat gluten free. All you need is the willpower to stay strictly to the diet and not cheat, and some people cannot do that with the confirmed diagnosis. There are no prescription meds to take for celiac - the only prescription is the avoidance of gluten

The one thing you will need a doctor's help for is in getting your vitamin/mineral levels checked, which will require lab work. Most of us end up being deficient in one or more essential nutrients - Vit. D, B12, folate, iron/ferritin, magnesium, calcium, zinc and rather than just throwing a bunch of supplements at your body it is best to know what these are because you might need a prescription strength D3 to avoid osteoporosis, for example.

You would be surprised how many posters on here are self-diagnosed, including moderators (me included) because we could not find anyone willing to test us, or because we had gone gluten free and were unwilling to regluten ourselves just to get tested. So be aware that if you change your mind about getting tested, you will need to go back on gluten for 2-3 months and it will probably be more excruciating then than it is now :unsure: