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It's Been A Horrible Day- Can Anyone Help?

suziq0805

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suziq0805 Enthusiast
suziq0805
Posted

It's been quite an awful day for me and any advice what to do regarding testing/insurance would be great. I'll try not to ramble too much :)

I'm 3 months into a gluten challenge and biopsy was scheduled for Monday. This morning my doctor called and said for some reason he's not able to perform procedures at the hospital for awhile. (I think he's a good doctor since he was recommended to me by members of the local celiac support group as the doctor that finally figured out their celiac problem). Anyway...it will be at least a month before he could get me in. My symptoms are mostly muscular/nerve issues and they are back now that I am teaching again. I don't want to wait longer!! If gluten is the reason I have weak/painful muscles and other issues I don't want to keep putting it in my body. But yet since I don't have the GI symptoms I feel a diagnosis would be great because I'm concerned that if I go gluten-free and don't see an improvement how will I know if it's because gluten isn't an issue or if my nerves are just really damaged and gluten is an issue but it's just going to take forever to see any improvement?

Then my husband got laid off today. Our health insurance is through his job. We will have the option of COBRA for awhile, even though it will be spendy. I am elible to enroll on insurance through my job and I had earlier contacted them to see their policies on covering celiac disease and they won't deny me insurance since it will be through a group plan. My concern is whether to get testing done before switching insurance. Since I've seen a doctor to discuss the possibility of celiac I wonder if a new insurance company would cover testing, or if they would if there would be a waiting period.

A few years back I went to Mayo and contacted them today to see how fast they could get me in for a biopsy but they need a fax with my case and a doctor has to look it over before they could give me an answer.

Any advice or things to consider in my decision would be greatly appreciated.

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

It's been quite an awful day for me and any advice what to do regarding testing/insurance would be great. I'll try not to ramble too much :)

I'm 3 months into a gluten challenge and biopsy was scheduled for Monday. This morning my doctor called and said for some reason he's not able to perform procedures at the hospital for awhile.

Given that you've been eating gluten for 3 months and feeling poorly AND the fact that your insurance will soon run out I would either:

A. Call the dr back and tell him about your insurance ending and ask if he can refer you to another dr that can do it right away.

OR

B. Just go back to gluten free and feel better and forego the biopsy.

I would lean towards B if i were you. Not getting diagnosed will not prevent you from getting new insurance, but getting an official diagnosis MIGHT. I know how frustrating it is to not have an "official" answer but it's also risky to keep doing damage to your body when you might be without insurance for a while. IF you happen to have something else besides gluten intolerance/celiac, you can still undergo medical testing for it while on a gluten-free diet, but it seems likely that if you went back to gluten and are feelign worse than ever that you have a problem with gluten.

Did you have blood tests? If not, your dr should be able to do those now before you go back to gluten-free.

suziq0805 Enthusiast
suziq0805
Posted
  • Author

I did have some bloodwork previously (negative), but it wasn't totally complete he said. So he wanted to test me through Prometheus. But since insurance doesn't always cover the Prometheus test our plan was to do the biopsy first and if that was negative then decide whether we wanted to fork out the $$ for that blood test.

My symptoms are back. But I'm a music teacher and I tend to get a "flare up" every Fall. So I don't feel like I can totally say it's because of being back on gluten because it could just be from teaching and using my arms more (I'm a music teacher so I'm conducting and playing instruments every day, while in the summer I'm not). My symptoms tend to cycle. I'll have good (well, decent and tolerable) times and then bad times where I really have to limit what I do. Just going gluten-free again is something I've debated, but I'm concerned at the possibility since it's been going on for years (like almost 10 years) could I have nerves that are permenantly damged and I'll never see relief if I try the diet without a diagnosis?

I guess so much has happened today that my mind is just on overload and trying to play out different options to see what is the best to do.

kareng Grand Master
kareng
Posted

I can think of 3 reasons that doc can't use the hospital :

He has done something ( probably many somethings) that have led him to be banned or restricted until a hearing

He has lost his malpractice insurance

He has some sort of financial/ business relationship with them that is in negotiations.

I would ask if he could help you get another doc. Whatever you decide, get copies of any medical records he has on you right away. If there is some legal issue, particularlly a financial/ contract dispute, the records could be hard for you to get. They tend to get " frozen" and locked up in those situations. It can be a big mess.

AVR1962 Collaborator
AVR1962
Posted

Is there anyway you could see another doc and get the testing done? Seems like ashame to come so far and not carry thru with the testing at this point, especially while you do have insurance. Sorry to hear about your husband's job.

gary'sgirl Explorer
gary'sgirl
Posted

I have Celiac and my main symptoms are neurological like yours. I think, looking at it from my own experience, that it would be a good idea to pursue getting a biopsy asap or trying entero lab, because I have been gluten free for two years and my symptoms are barely better at this point.

If you don't find out if your reactions are for sure related to gluten and then go off of gluten and don't see any dramatic results you may think it's not related to gluten when infact it actually is and will just take you longer than others to start to heal.

From what I have read it seems that people with mostly neuro issue tend to take longer to heal.

Either way I would try to figure it out as quickly as possible and go back off of gluten if it does seem to be an issue. Doing testing with Entero lab might be the quickest bet.

Jestgar Rising Star
Jestgar
Posted

I can think of 3 reasons that doc can't use the hospital :

He has done something ( probably many somethings) that have led him to be banned or restricted until a hearing

He has lost his malpractice insurance

He has some sort of financial/ business relationship with them that is in negotiations.

I would ask if he could help you get another doc. Whatever you decide, get copies of any medical records he has on you right away. If there is some legal issue, particularlly a financial/ contract dispute, the records could be hard for you to get. They tend to get " frozen" and locked up in those situations. It can be a big mess.

My friend does a lot of the doc paperwork at a hospital and there are all kinds of really stupid reasons why a doc could be suspended like: He hasn't gotten is flu shot, or, No one told him that his license renewal form was due, or he was moonlighting.

So could be a bad thing, could be nothing. Either way, get an appointment with a different doc, or just go gluten-free.

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sreese68 Enthusiast
sreese68
Posted

My symptoms are mainly neuro, too. I didn't have much improvement neurologically speaking in my first two months gluten-free. BUT when I reintroduced gluten for a few days to see what would happen, I definitely reacted to it - jitteriness, anxiety/irritability, brain fog, hypoglycemia, fatigue, lightheadness, tinging up my entire leg. So if you aren't able to get a biopsy, you could go gluten-free for awhile and reintroduce to see what happens. Honestly, I was quite surprised at my reactions. I was expecting GI problems, but I didn't have any until the very end (I get C, so takes a few days for that to happen), and my GI symptoms were mild.

suziq0805 Enthusiast
suziq0805
Posted
  • Author

So I've contacted a few places today. One GI doctor can get me in this week for the endoscopy. I asked how many biopsies would be taken and the nurse said 1 unless she sees a need to take more. There should be more biopsies shouldn't there?

I also contacted Mayo and another GI office here in town. Hoping one of those 2 places get back to me soon so that I can get this decision made.

pricklypear1971 Community Regular
pricklypear1971
Posted

Ask your employer for the phone number to the insurance company and call them and ask about benefits. If it's a group plan there should not be exclusions.

You must ensure the old and new doc are on the insurance if you want to continue seeing both (depending on how that plan works).

You've gone through months of gluten challenge - don't give up now. Get the testing. Guidelines say 4+ samples for biopsy.

Print this and paste it to your forehead.

Open Original Shared Link

suziq0805 Enthusiast
suziq0805
Posted
  • Author

Well I think I have it all figured out!!!! My doctor recommended someone else to do the procedure and I'll follow up with my original doctor. It's a general surgeon doing the biopsy and after I questioned that a bit I discovered the surgeon has done several of these procedures before. He'll take more than 1-2 biopsies...actually up to 20! My GI doctor was planning to take 8-12 pairs of biopsies. At first I was hesitant to have a general surgeon do this but then I found out that no matter who did the procedure it has to be sent to pathology anyway, he'll do many biopsies from different places and I'll follow up with my GI. It seems like the reason my GI suddenly couldn't do it was paperwork with my insurance company, so it doesn't appear that the doctor is in any legal issues, but that my insurance wouldn't cover the procedure at the hospital he is at.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Well I think I have it all figured out!!!! My doctor recommended someone else to do the procedure and I'll follow up with my original doctor. It's a general surgeon doing the biopsy and after I questioned that a bit I discovered the surgeon has done several of these procedures before. He'll take more than 1-2 biopsies...actually up to 20! My GI doctor was planning to take 8-12 pairs of biopsies. At first I was hesitant to have a general surgeon do this but then I found out that no matter who did the procedure it has to be sent to pathology anyway, he'll do many biopsies from different places and I'll follow up with my GI. It seems like the reason my GI suddenly couldn't do it was paperwork with my insurance company, so it doesn't appear that the doctor is in any legal issues, but that my insurance wouldn't cover the procedure at the hospital he is at.

Glad you got it figured out! 20 biopsies, WOW! I hope they actually find something after all you went through challenging gluten for 3 months.

suziq0805 Enthusiast
suziq0805
Posted
  • Author

Biopsy is done!! The general surgeon who did it seemed pretty good (via referral from my GI since insurance paperwork didn't cover where my doctor does proecdures). He seemed like he doesn't expect me to get a positive biopsy for celiac but did the procedure since my dr. had ordered it. He took 15-25 biopsies at various locations. He said things looked good and didn't notice anything unusual through the scope, but we'll see what the biopsy results come back with. I'm still hopeful for a reason to explain dizzy spells, horrible stomach cramps in high school/early college, chronic arm pain/weakness/heaviness, headaches, burning muscle pain, mouth sores and other things I'm not thinking of at the moment. I just want a diagnosis other than muscle pain (that's my most recent diagnosis to explain the chronic pain). If I don't get a diagnosis I'm sure I'll also get a lot of "I told you so" from family that already often seems to think I'm just looking for something to be wrong. I'd given up looking into an answer for 3 years, then son's test results showed he is DQ8/DQ8. I figured it can't hurt to explore this option because if it is celiac then maybe I have a hope to return to playing music without pain!!!

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