New Doctor...Mixed Feelings...

[Ender]

I saw a new doctor (well, a PA who had 3 years experience in a GI's office) on Monday. I told her about my last doctor (who wanted me to take an IBS medication, a decongestant, two inhalers, and a sleeping med for my symptoms, none of which would have done a thing about my hands/feet/leg going numb/tingling). I told the PA that taking out gluten had reduced my gastro symptoms a great deal and that taking out a few other things had eliminated the numbness/tingling. I wanted to know where to go from there: a GI doc, a neurologist (for the neuropathy), and/or an allergist.

She basically said that I should stop eating gluten if it gives me this much trouble and that yes, my last doctor had not tested me properly for celiac given my history with wheat/gluten (a 2.5 week gluten challenge after several months of infrequent consumption of wheat). She said that she would refer me to a GI, but they'd insist on a proper gluten challenge for three months (what my last doctor SHOULD have done) and that "It sounds like you don't want to do that."

Nope. I don't want to eat that crap ever again. I see little point in it, especially after 2.5 weeks of eating it everyday made me so ill. 

I asked her if I should see a neurologist. I'd done a bit of research online and I was worried that if I really did have celiac, that I could end up with permanent nerve damage (and I wanted to rule out other things). Basically, I've eaten several foods that have triggered a mild version of the gluten numbness/tingling in my hands/feet/leg (as well as D): corn, wild rice, chocolate/cane juice. When I ate corn/wild rice the numbness hadn't come on for many hours afterward, but after I ate some chocolate (Enjoy Life) it came after roughly 20 minutes. She said that she'd never heard of celiacs getting those sorts of symptoms with other foods, especially that quickly and then implied it was all in my head.    She then said that I wouldn't get permanent nerve damage and joked that I should stop researching on the net because "that'll scare you to death."   I was paraphrasing a few things I'd read in the American Journal of Gastroenterology (or whichever one is ranked in the top one or two in terms of respectability...yep, I also researched the research material). You guys told me the subject I needed to research ("gluten neuropathy/ataxia"), but I went to pub med to see for myself what the research said. I wasn't pulling it out of Granny Bibi's Gluten-fad Blog. I was a little floored by her reaction, and I felt like I wasn't getting any information that would help me once I left the appointment besides, yeah, you should stop eating gluten. But that's a better reaction and more direction than many of you have gotten, so ^{yay me?} 

In any case, she said I don't need to see a neurologist, but she could send me to an allergist to do some food allergy testing. I'd told her that I think either eggs or dairy cause my asthma symptoms, I just didn't know which (I've figured it out on my own since then). It's eggs. Luckily, I had enough common sense to decline the proffered flu shot when I skimmed the egg allergy warning. 

I sort of have mixed feelings about the whole appointment. 

[LookingforAnswers15]

Hi, 

I can see that you were not pleased with your doctors attitude and to be completely honest, this type of attitude and reaction is not unusual for them. I often wonder why some of them are in medical field when they do not seem to care. Unfortunately, I have experienced everything you described regarding doctors and some of the symptoms. Since I bought some insurance that would allow me to request some tests and since the gp seemed clueless about autoimmune diseases and celiac, he was more willing to refer me to other doctors. I was also laughed at when I was mentioning symptoms saying it was also just stress and in my head (when I specified that I had nothing stressful in my life apart from not feeling well and not knowing what it was). Anyhow, I got to see a neurologist and it was waste of my time talking to him. He did some basic neuro tests but he was also clueless about celiac. He said it was not a well-known disease. What the heck. He kept saying it is all in my head and tried to just give me antidepressants before doing any tests or talking to me about my symptoms. I wrote down all of my symptoms so that I would not forget something to tell him and through our conversation I realized he did not even read them carefully. I requested an MRI (I was worried about MS because of tingling in my hands, muscle twitches, joint pain, back pain, headaches, etc). Luckily, it was my MRI was ok and I concentrated on food and eliminated everything that I though that might be causing some of these symptoms (eggs, dairy, soy, sugar, night shades, gluten free processed food, corn) and sure enough most of these symptoms disappeared. 

My advice is:

- if you can convince your doctor to send you to neurologist, just for peace of mind, do it. However, I think all these symptoms should disappear once you are completely gluten free for some time and once you avoid any food that you think it bothers you and causes some reaction. Trust yourself and what your body is telling you! After a few months, if your symptoms are not getting better or if you experience additional symptoms (does not have to happen), then seek additional testing for other autoimmune diseases. Good luck.

[Darren]

Use the at home test kits from glutenpro which is from Canada. They work and will give you some answers to help you figure out if you have celiac or not and you don't need to go through a dr to get them even in the US. With value of US dollar is pretty cheap to do the genetic test and the gluten test.

[Ender]

23 hours ago, LookingforAnswers15 said:

I think all these symptoms should disappear once you are completely gluten free for some time and once you avoid any food that you think it bothers you and causes some reaction. Trust yourself and what your body is telling you! After a few months, if your symptoms are not getting better or if you experience additional symptoms (does not have to happen), then seek additional testing for other autoimmune diseases. Good luck.

Yeah, I agree. I'm fairly sure they are related to my gut, or I would have pushed the neurologist angle more. I'm figuring out what my problem foods are. I just narrowed down another one this morning. I don't think it was the chocolate that caused my numbness/tingling when I ate some of that Enjoy Life chocolate bar, I think it was the sugar. I've been eating some breakfast sausage I made in the mornings the last few days and the tingling has been coming back faintly. I feel stupid. I knew I'd put in some brown sugar. Why didn't I think before I ate them? I've been so damn careful!

Sugar cane in all it's forms seems to be OUT. I hope I can tolerate it again in 3-6 months, and if I can't, then I'll likely go to a neurologist to rule stuff out.

18 hours ago, Darren said:

Use the at home test kits from glutenpro which is from Canada. They work and will give you some answers to help you figure out if you have celiac or not and you don't need to go through a dr to get them even in the US. With value of US dollar is pretty cheap to do the genetic test and the gluten test.

I've been gluten-free for over 3 weeks, so I could only do the genetic test at this point. Thanks for the idea, I'll look up the company and see what's involved in the genetic test.  

[manasota]

There is a flu vaccine now that is made without using eggs.  Also, being intolerant of eggs is not the same as having an allergy (anaphylaxis).  If you do a google search for egg allergy and flu shot and look on the Mayo Clinic site, they will explain  all this.  An allergist will know for certain how to handle your issues.  

I hope for everyone who is able to get a flu shot, to get a flu shot.  It's good for the individual and for our society as a whole.  Good luck!

[10years]

I understand that it takes months up to years for the intestines to recover from gluten completely. My daughter is allergic to chocolate can't even smell it up close. I have known people to be allergic to corn, green beans, garlic, tomatoes, some types of cheese and on. Ask your doctor how much time was spent on Celiac in Med School, The older the doctor the less time was spent. I had a doctor tell me that I probable know more about it than he does. 

[maseymn]

You sound like you have multiple food issues. As your gut heals on a gluten free diet, you might find your body gets less reactive to some of those other foods. There's a blood test (ALCAT) for multiple food sensitivities. I'm sure insurance won't cover it, but if you can afford it, it might be better than multiple elimination diets and reintroduction of foods. Once you know exactly what you are having problems with you can try eliminating those things for a set period of time and see if your symptoms go away. If you need to try an elimination/reintroduction diet, I had good luck with something called the "Whole 30". You can google it. I found out I have a sensitivity to dairy (in addition to the celiac). Regarding doctors, it's trial and error. Try to find someone who specializes in celiac, or just has an extreme interest in it. Ask the nurses, they might have a recommendation. Even a good GP with an interest in celiac can get you going in the right direction. Hope you start feeling better.