Dr Wouldn't Test But Gave Diagnosis

[Ellette]

So after what I think is probably about 2/3 of my lifetime (ie., 25 years) with symptoms, I got bloodwork done to test for Celiac. It came back negative of course, my body likes to make me pay for doctors' boats and vacations so I usually get to go through every step. Things have been hard for us lately though, so when we realized I would then need the endoscope, and that insurance would leave us having to still pay about $1000, my husband about had a heart attack. I went to the consultation with the gastro. After telling him all my freakishly long symptoms list, the fact that we were going to have to do a payment plan or else save up for the test and do it later, because of how I reacted to 2 months off gluten (my neuro asked me to try it first), AND the fact that I have epilepsy which makes the test more dangerous to do were enough he said! He didn't feel he needed to do the endo and it is obvious enough.

Yay! It feels like I've won the lottery or something, for the first time in my life I've had something go easily and I'm kind of waiting for the other shoe to drop. It doesn't seem like it should be that easy. He said the other things that have similar sounding symptoms don't line up as well. Chron's disease is a possibility I guess, but he wouldn't want to do any of the testing for that except for a last resort especially because of my epilepsy which adds an extra risk like with the endoscope...plus, it shouldn't get better with going off gluten. IBD doesn't really sound quite right he said, though it does often go along with fibromyalgia which I have, but like with Chron's it doesn't respond to gluten free. Cancer doesn't sound right thankfully, nor does the gall bladder...so that brings us back to Celiac he said. Yes, there are other things, but for the most part that was it I guess.

He said that there are symptoms that are more Celiac specific and some that are more Gluten intolerance specific and I have both so I should go ahead and say I have Celiac because people take you more seriously that way. He said some people don't believe "simple gluten intolerance" exists which is upsetting to him.

We are hoping this will, along with my digestive problems, actually help my fibro, epilepsy, arthritis (which I developed in my early 20's), nerve problems, unexplained bruising, hair loss, memory problems, tinnitus, TMJ, PVC's, hormone problems, and a bunch more things that could be related to Celiac and have always had doctors either look at me as if I'm being a big baby or as if I'm weird (I've had many a doctor actually tell me I'm weird...like when I got shingles my senior year in high school). I'm quite excited. Now it is just a matter of getting used to cooking 2 meals, 1 for me, and 1 for the rest of the family.

My biggest thing will be actually getting my mom on board with this. I've had epilepsy since Nov 28th, 1999 when I had my first seizure, but wasn't officially diagnosed till about 6 or 7 years ago when I started getting serious headaches and an MRI found brain deterioration. My mom doesn't really believe I have epilepsy still. She feels I'm probably making it up in spite of the EEG with the freaky looking brain waves. She told me I didn't need the test for Celiac because it was probably something else and then started listing off all sorts of other things. My dad said that she thinks that back before I got diagnosed I kept looking up things trying to pick something I might have like picking things I was hoping it was. Umm, no mom, I kept doing research on whatever it was that the doctor had said "it might be this, we are going to test for it". Like when they said it might be lupus (one of the things my dad brought up) I looked up that to see what I might be facing. I'm the sort who likes to be fully prepared so I just wanted to know what I would be up against if I had it. If I don't have it...fantastic, if I do...I'll know what I have to do. It is really hurtful though to have your mom not believe you or seem to care what you are going through. Aah well, when I'm feeling better I guess she'll start to see sense eh?

Sara

[GlutenFreeManna]

Welcome to the board! If you were gluten free for 2 months prior to the blood test then you probably got a false negative on the testing. If you have not yet told you mom the details of your tests you need not tell her it was negative. You can simply tell her the doctor looked at your test results and looked at your symptoms and diagnosed you with celiac. Which is true. Tell her you must be 100% gluten-free under doctor's orders. I hope you do find relief from most of those symptoms. I had many of the same things you have. My drs wanted to diagnose me with fibro and I had unexplained seizures prior to going gluten free. The "fibro" pain and joint pain I had got better with about 6 months of a gluten-free/soy free and dairy free diet. I have not had a seizure since going gluten free 1 year 5 months ago. I was able to start driving again and got much of my life back because of learning about celiac. At the very least you should find your hair stops falling out--that is likely due to malnutrition.

[ravenwoodglass]

Welcome to the board. You have a great doctor to put your health before his need for a new boat. Do be strict with the diet and be very careful of CC as those of us with neuro impact do need to be very strict. You can learn a lot by reading through the posts here and if you have any other questions do feel free to ask. I only expected my gut symptoms to go away but was shocked when most of my other problems were relieved also. I hope you continue to improve and do be sure to check any meds you are on with the maker to be sure they are gluten free. If you are on meds also be aware that dosage may need to be adjusted down once you have healed a bit and some you may be able to stop. Never stop any med suddenly though without talking to your doctor first.

[Judy3]

Hi Sara,

Welcome to Celiac, the disease that none of us wants but are happy to finally have a name for the lifetimes of misery we've suffered. I've been gluten free for 6 months now and I have to be honest, I feel better than I did when I was a child. Most of my medical conditions that were diagnosed prior to Celiac have gone away or are much better than they were before I went gluten free.(Diabetes - off meds, Fibromyalgia- gone, etc...) This board helped me a lot in the beginning stages of so many questions so read all you can. I am finding that gluten free is easy at home, a little tougher in a restaurant but getting easier all the time. My family has joined on the gluten free bandwagon for the most part. I made meals, they tried them and decided it was just as good my way. I've learned to bake cakes from scratch that I've brought to work and parties and no one can tell it's gluten free.. (Many screeches of 'You can't have that can you?' when I take a slice of cake or a cupcake LOL then I say, 'yes I can I made it so I know it's safe' Then the gasps of 'This is gluten free'? as they reach for another cupcake.. LOL Ok I ramble so early in the morning but it's kind of fun.

Welcome aboard, You'll be amazed at all the things that surprisingly go away once you've been gluten free for awhile. :0)

[Loey]

So after what I think is probably about 2/3 of my lifetime (ie., 25 years) with symptoms, I got bloodwork done to test for Celiac. It came back negative of course, my body likes to make me pay for doctors' boats and vacations so I usually get to go through every step. Things have been hard for us lately though, so when we realized I would then need the endoscope, and that insurance would leave us having to still pay about $1000, my husband about had a heart attack. I went to the consultation with the gastro. After telling him all my freakishly long symptoms list, the fact that we were going to have to do a payment plan or else save up for the test and do it later, because of how I reacted to 2 months off gluten (my neuro asked me to try it first), AND the fact that I have epilepsy which makes the test more dangerous to do were enough he said! He didn't feel he needed to do the endo and it is obvious enough.

Yay! It feels like I've won the lottery or something, for the first time in my life I've had something go easily and I'm kind of waiting for the other shoe to drop. It doesn't seem like it should be that easy. He said the other things that have similar sounding symptoms don't line up as well. Chron's disease is a possibility I guess, but he wouldn't want to do any of the testing for that except for a last resort especially because of my epilepsy which adds an extra risk like with the endoscope...plus, it shouldn't get better with going off gluten. IBD doesn't really sound quite right he said, though it does often go along with fibromyalgia which I have, but like with Chron's it doesn't respond to gluten free. Cancer doesn't sound right thankfully, nor does the gall bladder...so that brings us back to Celiac he said. Yes, there are other things, but for the most part that was it I guess.

He said that there are symptoms that are more Celiac specific and some that are more Gluten intolerance specific and I have both so I should go ahead and say I have Celiac because people take you more seriously that way. He said some people don't believe "simple gluten intolerance" exists which is upsetting to him.

We are hoping this will, along with my digestive problems, actually help my fibro, epilepsy, arthritis (which I developed in my early 20's), nerve problems, unexplained bruising, hair loss, memory problems, tinnitus, TMJ, PVC's, hormone problems, and a bunch more things that could be related to Celiac and have always had doctors either look at me as if I'm being a big baby or as if I'm weird (I've had many a doctor actually tell me I'm weird...like when I got shingles my senior year in high school). I'm quite excited. Now it is just a matter of getting used to cooking 2 meals, 1 for me, and 1 for the rest of the family.

My biggest thing will be actually getting my mom on board with this. I've had epilepsy since Nov 28th, 1999 when I had my first seizure, but wasn't officially diagnosed till about 6 or 7 years ago when I started getting serious headaches and an MRI found brain deterioration. My mom doesn't really believe I have epilepsy still. She feels I'm probably making it up in spite of the EEG with the freaky looking brain waves. She told me I didn't need the test for Celiac because it was probably something else and then started listing off all sorts of other things. My dad said that she thinks that back before I got diagnosed I kept looking up things trying to pick something I might have like picking things I was hoping it was. Umm, no mom, I kept doing research on whatever it was that the doctor had said "it might be this, we are going to test for it". Like when they said it might be lupus (one of the things my dad brought up) I looked up that to see what I might be facing. I'm the sort who likes to be fully prepared so I just wanted to know what I would be up against if I had it. If I don't have it...fantastic, if I do...I'll know what I have to do. It is really hurtful though to have your mom not believe you or seem to care what you are going through. Aah well, when I'm feeling better I guess she'll start to see sense eh?

Sara

Welcome to the board. I'm going to post some web sites below that might help you (or help any people who don't understand this disease). I hope they help. You have joined an amazing group of people. They've been a lifeline for me since I was diagnosed last spring and joined in October. We're all here for you!!!!

Loey

Open Original Shared Link

https://www.celiac.com/gluten-free/

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[Ellette]

Thank you everyone, I really appreciate it! I'm giving everybody their own paragraph, figure that makes it easier.

Ooh, the idea that my hair might stop falling out is exciting! At one point I actually had to wear a wig. Sure, I got to have straight hair for once in my life and it was a great wig...such a good one that a family friend even came up to me and told me she liked my haircut. Still, I'd prefer to just have my regular hair back. I figure it will be a while before I notice any neurological benefits, but while I'm not normally patient I am willing to try it now!

Thank you for the reminder about the medications. I have to double check whether or not my generic Lamictal and Zonegran are gluten free or not. Kind of pointless to get it completely out of everything else if you are still taking a bunch of it morning and night eh? My goal/dream is to have my meds need to be dropped down like mad. I just had to have both of them doubled a little while ago because my seizures were so bad that I wasn't able to function. If I need more, I will have to have a third added because my neuro won't go higher with either...and I'd rather not.

I know, it seems so weird to be happy to have a diagnosis like Celiac, but it is like when I got the epilepsy diagnosis where I finally had SOMETHING I could point to and say "see, I'm NOT insane". I'm a sourdough or soy sauce and rice (and NO, the gluten free stuff isn't quite right) sort of person so it isn't going to be easy to get used to but I can handle it and I suppose if I keep eating the pretend soy sauce I'll get used to it eventually.

Thank you for all the links, I'll look into all of them! It is amazing what all is out there. I am just hoping I can get to where I can get a handle on what all is out there. My biggest thing will be to find food that I like the texture of really...I can handle taste more than I can handle texture. I had to give a couple brands of cookies to my husband because of the texture. The flavour was ok but I couldn't handle the texture. My husband seems to be able to eat anything though, but doesn't like the Quinoa pasta...which I do. Go figure.