Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

GhostLady

I Can't Do This Anymore. Any Suggestions?

Recommended Posts

I am still eating gluten while I am waiting on my next Dr. Apt. on April 30th and I am getting sicker and sicker. Yesterday I couldn't even get out of bed. I just can't take it anymore. I just don't want to be sick one more day.

At my first apt. I saw a Dr who didn't know much about celiac. She ordered a blood test and told me it was negative but when I went to pick up the results, I noticed that she only ran one test instead of the full panel. About a week later I saw a NP who I had been told was familiar with celiac. He did seem to know a lot more about it than the 1st Doc but he didn't seem to know much about the blood tests. He didn't seem to think it was a problem that they only ran one test and he didn't seem to think there could be false negatives. He refused to order the full celiac panel. He said he wants to wait to see if the GI Dr. wants to order it on the 30th. He did say that I could try the gluten-free diet for a few weeks before my apt with the GI Dr. on the 30th. I asked him if that might cause more false negatives but he said that going off gluten for just 3 weeks wouldn't cause a false negative.

I'm just not sure what to do. I am 99% sure that I have celiac and I really want to stop eating gluten and finally start feeling better after 15 years of this but I really NEED an actual dx from a dr. It is really important to me for several reasons.

I have tried to get in sooner but they don't have any openings for any of the Drs. I have even tried another office and the wait is even longer. I have been thinking of just going to the first Dr. I can get into even if they know nothing of celiac. Maybe I can talk them into doing the testing but I am worried that if they do a biopsy without really knowing the proper way to do it then it will also show negative and I might have trouble persuading the GI Dr. to do another one.

Does anyone have any advice? Any other way I could get a dx sooner?

If I stop eating gluten for a couple of weeks but start eating it again just 1 week before my Apt, would it still be possible to get a positive result or is 2 weeks off gluten enough to cause a false negative?

Thank you in advance....

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


I am so sorry you are going through this. Is there any way you can call the GI docs office and at least get a phone consult and see if they will order the labs before you are seen? Then maybe you would have those results in hand when you do have your appt. I'm not sure though how going off gluten might affect a biopsy should he want to do one. It would seem that if the intestinal damage is that great, it's not going to heal in just a couple of weeks, but I do not know if that is true or not. Hopefully someone else will chime in with more information.

Hang in there!

Nancy

Share this post


Link to post
Share on other sites

I just had my scope and biospy 2 days ago. Two weeks before that I saw the gastro for the first time and when we scheduled the biopsy I was told to eat gluten- and lots of it, some at every meal. I was soooo sick, I have (I think) dh and broke worse than ever and lost over 15 lbs in the 2 weeks (I'm overweight so that wasn't as horrible as it could have been). I won't find out the results for about 3 weeks.

The day of the scope, I didn't eat anything, of course. Yesterday, no gluten. Today the rash is not as bad- which is saying a lot for me.

Just want you to know that others have gone through it, and it is a painful, nasty experience!

You need to decide (and I'm sure you know) why you feel that you HAVE to have a dx. I say this because this board is chockful of stories about people that never got a dx, but did go gluten-free and have felt so much better. It is also full of warnings about false negatives- even in biopsies. Doctors rarely order the right blood tests and few labs do them well. And for the biopsies, well it is easy to get a piece of healthy tissue when there could be damaged tissue a cm away. It is definitely a hit or miss situation.

In the end, you, I and everyone else going through this has to decide for ourselves what we are going to do about it.

In the year and a half that I have had my rash I have seen over a dozen doctors and been on over 20 meds (hubby is in the US Army so it is rare to see the same doc more than once and I present an unusual case so they always like to bring someone else in just to see). And if I've learned nothing else, I have learned the medicine is a very INexact science.

Please, ask the doc how much gluten he feels you should be ingesting a day (some say a piece of bread a day and mine was a lot more). Then decide what you are going to do if the tests come back negative.

Good luck!

Jeannine

Share this post


Link to post
Share on other sites

Thank you both for your replies. I really appreciate all of your help.

First I want to share my good news. I found a Dr. that will see me TODAY!!! I am sooo happy. He is just a family practice Dr but better than nothing. I have seen him before several years ago and he did seem to listen to me then. I just don't think he knew much if anything about celiac since he didn't mention it even though I presented "classic" symptoms. He did seem to be open to suggestions from me though so I am hoping he will order the tests when I request them. If not, maybe he can at least get me into the GI sooner with a referral. I will post an update after my appt.

horsesjapan:

I have tried to get them to go ahead and order the tests before my appt so he will already have them when I go. Then I could go ahead and start eating gluten-free so I can let him know if it helps. They said I have to see him first.

jeannine:

Sorry to hear that you had to go through so much while waiting on your testing. It's horrible that we have to keep poisoning ourselves just to get the testing. I hope you will start feeling better soon now that you can finally stop eating gluten.

It's hard to really explain why I want an actual dx. One of the reasons is my 4 children. I think their ped will be a lot more likely to test them if I can show him something from my Dr. 3 of them have a couple of minor symptoms but I'm not sure that will be enough to convince him to test them.

Another reason is my family. My mother believes that Drs are close to Godlike. If a Dr. doesn't say it, then it can't be true. I wouldn't worry about her opinion so much but right now we are staying at her house while we remodel ours. My parents are doing most of the grocery shopping because I don't even feel like getting out of bed most of the time. They will not buy gluten free foods unless I can "prove" to them that I need them. My hubby will buy them for me but he is so busy with work and remodeling our house that he doesn't have time to shop often.

I am also worried about whether I will need a dx for some reason in the future.

What if I get admitted to the hospital and they refuse to give me gluten-free food without a dx?

What if something happens down the road and I would need to go on disability? I would think any medical dxs that I have would help with that.

What about other medical problems that I could have caused by having untreated celiac for so long? Will the Drs. even check for these things without a Dx of celiac?

Just a few possibilities. I'm sure there are more. There are just so many things that can happen in the future that cannot be predicted. Going gluten-free is a permanent lifelong decision for me. If I feel better, I don't want to have to ever touch gluten again so I want to make sure I get all of the testing out of the way since there is no turning back. I don't want to ever have to regret doing it to soon.

I will be going on the diet no matter what but I want to wait until all of the testing is done. Even if the tests are all negative, I still plan on going gluten-free. There's no question of if, only when.

Thank you again for your replies. I don't know what I'd do without all of you to support me right now...

Share this post


Link to post
Share on other sites

My ILs are the same in regard to the doctor. Especially when it is MILs conditions, but when it was ds's food allergies they didn't get that it isn't "just a little rash", but that it is his immune system that is wonky and we don't want to mess with it! He isn't diagnosed celiac, but he does have IgG responses to wheat, dairy, soy, malt, egg and based on diet he is also sensitive to barley and spelt. Anyway, I totally hear you on that. I also understand the desire for a dx in order to get the kids tested. It took me 6 years to finally get my ds IgG tested, and I knew he had food issues since he was born (couldn't figure it out beyond the dairy and soy). It probably would have been easier if I had been diagnosed with some sort of food issues. If I do come up positive (I'm waiting on results right now), I definitely want my kids tested, though my allergic one would probably come up negative becaue he's been off gluten for at least 6 months, can't remember when we gave up on the spelt bread. Anyway, good luck and I'm glad you found a doc to see you right away. I hope he's willing to work with you!

Nancy

Share this post


Link to post
Share on other sites

Finally a Dr. who listened to me and actually seemed to take me seriously. Maybe now I can finally get these tests over with and start feeling better. :)

Phyllis,

Thank you for the link. I did take the blood test list with me but I didn't even get to show it to him. He actually seemed to know a lot about celiac. He said he would rather just go ahead and send me for the biopsy and skip the blood test for now. I am all for that plan. Since the one test I did have the last time came back negative, I'm afraid that the whole panel might also be negative. I would still like the blood work to be done just to see but I think I am going to wait until I know for sure the biopsy is going to happen (they are supposed to call me tomorrow with the appt date). I'm afraid if I get the blood test first and it is negative, they will decided not to bother with the biopsy. As soon as I have a date for the biopsy, I am going to request the blood tests a couple of days before so the results will not be back until after the biopsy has already been done. I wish I didn't have to do that but it is the only way I know to make sure I get all of the tests.

Nancy,

Sounds like your MIL and my mother belong to the same club. My mother takes her health very seriously. As far back as I can remember she has always had something wrong. She has been on so many meds (way too many) and always thinks there is something else wrong with her. Now that I have been talking about celiac, she thinks I am just looking for something. I guess I am looking for something, something to explain why I have been sick for 15 yrs. She did seem to take it a little more seriously after I told her that the Dr. thought it was a very good possibility based on my symptoms.

How many children do you have? What are their ages?

So your son has not been tested for celiac? Sounds like he could have it since he has so many allergies and the rash. Is it the DH rash or do you know for sure? Are his symptoms better on the gluten-free diet? Maybe they could do the gene test for him since he has already been off gluten for so long.

Do you also have symptoms or are you just getting tested for your son? Hope you don't have to wait long for the results. Waiting is the worst. Let me know what you find out.

Almost forgot to mention: The Dr. also scheduled me for an MRI on Monday since I have been having a lot of headaches and dizziness. I am a little worried about that. I still think it's all related to celiac but I'm sure I will feel better when I know for sure. I'm glad he's at least doing the MRI so we can rule out a few of the more serious conditions.

Share this post


Link to post
Share on other sites

I am so sorry you are going through so much. I do wish more doctors would wise up and realize that when we have a good response to the diet that is diagnostic. About the MRI don't let that scare you. I had them also because of my balance and headaches. When they review the films with you if they remark about something called UBO's those are recognized as diagnostic for celiac in many countries but not here. They do bear a strong resemblance to MS lesions but are not located around the mylin sheath. I ended up having an unneeded spinal tap, not a pleasent experience because my neuro was clueless, but most neuros in the US are clueless about them. When my spinal came back negative then I was told to just consider them an anomaly. I continued to suffer for three more years after they found these on my MRI and it wasn't till after I was diagnosed and my symptoms resolved that I started researching and discovered what the white spots really were.

Do remember that the diet is diagnostic and that you don't need a doctors permission to be on it. When you are done with all the testing that YOU decide you want to do be sure to give the diet a good shot, no matter what the results. Also the biopsy does have a rather large number of folks that are missed, so please don't go by the results of the biopsy or blood test for a certain diagnosis. For some of us only the body and it's relief and healing gluten free are the real diagnostic tool.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites
Nancy,

Sounds like your MIL and my mother belong to the same club. My mother takes her health very seriously. As far back as I can remember she has always had something wrong. She has been on so many meds (way too many) and always thinks there is something else wrong with her. Now that I have been talking about celiac, she thinks I am just looking for something. I guess I am looking for something, something to explain why I have been sick for 15 yrs. She did seem to take it a little more seriously after I told her that the Dr. thought it was a very good possibility based on my symptoms.

How many children do you have? What are their ages?

So your son has not been tested for celiac? Sounds like he could have it since he has so many allergies and the rash. Is it the DH rash or do you know for sure? Are his symptoms better on the gluten-free diet? Maybe they could do the gene test for him since he has already been off gluten for so long.

Do you also have symptoms or are you just getting tested for your son? Hope you don't have to wait long for the results. Waiting is the worst. Let me know what you find out.

My MIL has rhumatoid arthritis, had a heart attack about 10 years ago, double bypass surgery, high blood pressure, osteoporosis, and is on oxygen (long story behind that, I think it is the hospital's fault). She seemed to feel a lot better when they were doing Atkins (which would be low wheat/gluten) and I wonder if her RA is related to gluten intolerance. My SIL has juvenile diabetes and NEVER looks healthy (doesn't really follow a good diet for a diabetic either IMO). MIL doesn't seem to question the drs about all her meds or anything, just takes them at their word.

I have three kids, ages almost 9, 7.5, and 4.5. My middle one is the food allergic one, and he was not tested for celiac. I know I had talked to the ped nurse practitioner we were seeing at that base about it, but I am not convinced the right test was ordered, and whatever one test she ordered came back negative. He was very young though, about a year, so it may not have been accurate anyway. I've always been told his rash is eczema, but he had a bad outbreak after we gave spelt bread a try and it took months for the rash to go away. To me it looked like DH, but I don't know and we were in the middle of moving overseas, so I never pursued anything with it. I know he is IgG reactive to wheat (not sure what they tested, I was just told wheat, not gluten or gliadin or specifically what IN the wheat, kwim?) so we just do our best to avoid gluten, since he has also reacted to barley and spelt. If I come up positive I will request he have the gene test, because then it'll be easier to convince people to take it seriously, ie it's not "just a little rash".

I do have symptoms, I have had GI troubles (gas, bloating, stomach pain, diarrhea) on and off for the last 15 years or so, but recently I'm also noticing that I feel dizzy or lightheaded and sometimes feel like I'm going to lose my balance. I am having trouble finding words when normally I'm very articulate. I'm stumbling over words and stuttering sometimes. I also suffer from anxiety and sometimes depression (was on Zoloft for a year but stopped about a year ago) and wonder if it is related. Right before Christmas I just ate what my ds was eating and I felt so much better. Then the holidays (and the food) came and then the move and it was just easier to eat whatever. So I'm in the testing process now, but plan to go gluten free after it is all done no matter what the tests say and see how I feel. Oh, my uncle has celiac, and I would be willing to bet my dad does as well (he's suffered GI and skin issues as far back as I can remember), plus my sister and my brother both have GI issues and my sis gets migraines. So I really wonder if it is a family thing.

Glad you had a good experience with this dr and I hope the biopsy can be scheduled ASAP!

Nancy

Share this post


Link to post
Share on other sites

I had the same problem. However I had to go gluten free because I could not go to bathroom, and could barely lift my feet off the groung. I said hech with it. I went gluten-free and recovered. If you feel this bad you could be throwing the dice. This leads to many other conditions. It is up to you but the only 100% test is a gluten free diet. Good Luck!

Share this post


Link to post
Share on other sites

I think you have a good plan about the biopsy and test. My idea would be to see if you IL would help you do a gluten free diet immediately upon completing the tests and before you get the results. This would be a "test" or "additional information" to take to the doctor.

What might happen is a striking improvement in your symptoms that will even amaze them! And perhaps your doctor is sharp enough that even if the tests are not conclusive, he might diagnose you clinically and tell you to continue to follow the diet.

Please keep up updated on what happens.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

Share this post


Link to post
Share on other sites

ravenwoodglass,

Thank you so much for the info about the MRI. I would have been terrified if they found something on the MRI but now that I know about the UBo's, I know not to panic right away. Don't worry, I will definitely be doing the gluten-free diet no matter what the tests say. I KNOW what is wrong with me. I am hoping to make it "official" but if that's not possible it won't prevent me from making myself better.

Nancy,

Gosh it sounds like celiac symptoms run on both sides of the family. No wonder your son has symptoms at such a young age. Maybe that is a good thing. At least you know to keep him gluten-free so he doesn't have to suffer and keeping doing damage into adulthood like most of us have. Sometimes symptoms are a good thing. Our bodies tell us there is something wrong even if the Drs. don't see it. I know how hard it is when the whole family isn't on board with treatment but I am a big believer that mothers KNOW when something is going on with their children and what is best for them. Are you planning to have the other 2 tested too? I thought you'd said that. Would probably be a good idea with the family hx and all. My oldest doesn't have symptoms but I'm going to have her tested anyway. If she does have celiac, I really hope it shows up on the tests. She is 15 and very stubborn. I doubt she will even try the diet unless she tests positive. We are planning to make our whole house gluten free after all the testing is done but I know she will still eat gluten at school and friends houses.

Your symptoms sound a lot like mine. Mine started as mostly GI but now the neuro ones are worse or maybe they just seems worse because I have been dealing with the GI ones for so long I am getting used to them. I too was on Zoloft for about a year. It did seem to help a little with the anxiety and depression but after a yr. I started getting used to them. The Dr increased my dose but that made me to drowsy. I took myself off of them. I don't recommend that. The withdrawals were horrible.

Please let me know what your tests results are.

jmcbride4291,

I completely agree with you. I hate it that I have to keep poisoning myself and possibly doing more damage but right now I feel like this is what I need to do, especially for my kids sake. Hopefully it will only be for another week or two. I will be going gluten-free as soon as the biopsy is over. Response to the diet would be enough of a test for me but unfortunately it's not enough for the Drs. or my kids schools.

mftnchn,

Yes, I plan to start the diet just as soon as the test is over. I'm not waiting on the results. I've already been shopping for gluten-free foods so I will know what stores carry what products when the time comes to start shopping. I am already eating gluten light. The Dr. told me not to eat much gluten, just enough to keep it in my system for the tests.

I wish I could get a dx from the Dr. based on just a response to the diet but I've already asked the GI Dr. if they would give me a dx based on diet response and he said no. I have to have the testing for any hope of an actual dx. I didn't ask my GP about it though but I will if the tests end up negative.

Update:

I still haven't heard from the Dr. about when my biopsy appt is. If I don't hear something by the end of the day, I guess I will have to call them back.

Share this post


Link to post
Share on other sites

ravenwoodglass,

Do you know of a web site I can visit to learn more about the UBO's? Just thought it might be good to know a little more about it before my MRI on Monday just in case they do find them.

Thanks,

Mary

Share this post


Link to post
Share on other sites

Just thought I'd post an update:

After the good luck I had last Wednesday finding a Dr. who would finally listen to me, things have been going down hill.

First, his office called me on Friday to let me know that they couldn't get me into the GI's office any sooner so I am stuck waiting until the 30th. They can't schedule the biopsy until after I see the GI so I'll have to wait even longer depending on how booked they are. They also told me that they wanted to go ahead and do the blood work so there goes my plan to wait until the biopsy is scheduled.

I went to the lab Friday to have my blood drawn. I asked the lab which tests were ordered and she didn't really seem to know. I showed her the list of tests for the celiac panel and she said that only two of them were ordered.

The EMA and the total IGA. I told her I would call the Dr. to see if he would call them and order the other ones. I also asked her how long it would take to get the results and she said "probably a couple of hours." With a very shocked look on my face, I explained to her that I thought it was a send out test because very few labs in the US do celiac testing. She said that the orders didn't say anything about sending them off.

After I left the lab, I went straight to the Drs. office to find out why they only ordered two tests and to make sure they were going to send the blood out. The nurse wasn't helpful at all. She said that they only ordered the tests because the GI's office asked her to and that she couldn't add any tests unless they requested it. She also said that she thought it was a send out test but she wouldn't even call the lab to make sure.

I went home and called the GI's office. The receptionist said I would have to speak to the nurse and she was busy so I would have to leave her a voicemail. I explained that my blood had already been drawn and I really needed to try to get it straightened out before they sent the blood to the Mayo Clinic. I asked if there was anyone else I could speak to but she refused.

About an hour later the GI nurse called me back. I asked her about doing the other 2 tests but she said that those 2 are the only ones this Dr ever orders for celiac. She also said she did not tell my GP's nurse to even order the tests. She only said that if my GP wanted to order them he could but somehow they misunderstood and ordered them anyway without even asking my GP. This nurse was very nice and seemed to want to help but said that she couldn't order anything without a Dr. order so the only way I could get the full panel is if I could get my GP to order it. I didn't even bother to call his office back since I knew his nurse wasn't helpful at all. The GI's nurse even called me back a second time to let me know that she talked to the Dr. after she hung up with me and asked him about doing the full panel but he said no. He only does those 2 on all his possible celiac patients.

Has anyone else had this problem?

Why would he order those particular tests?

Am I even more likely to get a false neg. since I am not having the whole panel done?

I did have the TTG test done a few weeks ago when I went to the walk-in clinic and it was negative. I didn't tell either of the other Drs. that because I was afraid they wouldn't test me at all if they knew.

Since the TTG is negative, is there a good chance that the EMA and total IGA will also be negative?

I guess now I've had all the testes except the antibody one. How important is that test?

If important, does anyone have a good reason I can share with my Dr. to convince him to do it?

I'm sorry for all the questions. I'm just so tired of fighting the Drs. to get well. I don't understand why I can't get the testing that I want since I am the one paying for the tests.

To make matters worse, I wasn't even able to get the MRI done today. I went to the clinic for my appt. and the machine was down. My Dr. didn't give them my correct phone number so they weren't able to call and let me know. She also said that it was probably a good thing that they couldn't do it today because there was also a problem with the insurance co. The GP's office called to pre-certify the MRI but the insurance co had it certified at the hospital instead of the MRI clinic so there was no guarantee that they would have paid. I had to call the Dr. to get that straightened out. They didn't bother to call me back (even though I asked them to) so I still don't know if it's been approved. Now I have to wait until the 24th to get the MRI.

I have so much trouble with DRs. I just don't understand. My husband (and other family members) can go to the Dr, tell them his symptoms, get the proper tests done within a couple of days, get a dx, and get treatment right away. Why do I have so much trouble???

So I guess I will stay on gluten until the 30th or until the biopsy as long as it's not to long after the 30th. If I don't get some answers at that appt or if they don't schedule the biopsy within a couple of weeks, I'm just going gluten-free and give up on all of them. I did try the gluten-free diet for a little over 48 hours and I felt a lot better. My GI symptoms were gone. I still had headaches and dizziness but even that didn't seem as bad. I told the GI's nurse that and she thinks gluten is probably to blame for my symptoms too. Maybe she can help me convince the Dr.

Sorry this is so long. I really needed to vent...

As always, thank you for your help and support. Any advice or answers to my many questions will be greatly appreciated.

Share this post


Link to post
Share on other sites

Just thought I'd ask again if anyone has any advice for me about my blood tests. I should be getting the results back soon so I'm wondering how disappointed to be if/when they come back negative.

Thanks,

Mary

Share this post


Link to post
Share on other sites