Bone Marrow Biopsy Friday

[luvdogz]

Hello everyone, I have read many of the posts and hope someone can give me their thoughts.

I am scheduled for a BMB on Friday, and I am scared! My hematologist says the only reason he can think of for my IgA to be rising so fast is myeloma!

Let me give you some background...

-I have IBS, diagnosed with a negative colonoscopy. I have had stomach problems my whole life, usually diarhea, and gets worse with stress. I have noticed the healthier I eat, the better it is.

-extreme fatigue, getting worse

- skin issues my whole life, been told it is mild psorasis, the guttate form. Scalp and small spots on my body, used to last 3-4 months and go away, now I have had them for 16 mos., last time I was at the derm., she said those don't even look like psorasis! what!

-I flush alot and have very flakey skin on face- doesn't fit usual rosacea pictures I've seen, gets worse with certain foods I think, (like gum for some reason!)

-body aches, and pains like the flu.

-mld hair loss

-photosensitive

-overweight, trouble losing weight

-trouble concentrating sometimes

-usual labs IgA 600+ (up over 100 in past 2 mos)

high platelets

told have what looks like anemia of chronic disease- low Iron sat, etc

low IgM

low bilirubin

high C4 or C3

low MPV

neg ANA, and rheumatoid, lupus, etc

slightly high sed rate

I have tried going gluten free for 2.5 mos., and thought I was feeling, and looking better, but my docs have said I am not celiac, negative blood test, and it is hard to stick with if the results aren't dramatic, and if docs are telling you that is not it!

Anyone have any thoughts? I am only 38, and feel 98. Whatever is wrong with me, they say it is not fibro., is getting worse. I am so tired of being sick and tired. I am scared of multiple myeloma too (or MGUS).

Does it sound like gluten intolerance? Should I give it a better try. Sorry for being so long Docs call me a puzzle! I just want to look and feel better!

Thanks!

[ravenwoodglass]

I would ask the doctor for a full celiac panel. The IGA is only a small part, and that was very postive. I had every issue you are speaking of prediagnosis and then a few more. I would insist on a full celiac panel, if one hasn't been done already. Keep in mind though that there can be false negatives with blood tests. That fact delayed my diagnosis for years. I was extremely ill but never showed postive in blood work, 20% of us don't. They also should check your levels for vitamins B12 and D at the very least. If you are feeling better on the diet stick with it. It can take time to heal. You may want to think about supplementing the B12 with a sublingual gluten-free form and see if that helps your fatique and brain fogginess. Make sure you are getting plenty of protein and go with whole unprocessed foods for a little while.

[Imanistj]

All I can tell you is what I would do. Knowing the doctor suspected myeloma would drive me to have any test that could rule it out. How long has he been following you? How quickly could you get a second opinion? A bone marrow aspiration will leave you achy for a while after the procedure but I would not fear the discomfort as much as a positive diagnosis. If you do have a myeloma it is definitely in your best interest to find out ASAP. Have you told you doctor how you feel about the test? Ask him if he thinks it is safe to wait while you have every possible celiac disease test. I am a retired RN and still think like a nurse. I am relatively new to celiac disease but have spent more than two months researching everything I can find about the disease. Please call the doctor today and ask that he discuss your fears with you. Remind the person who takes you message that the test is scheduled for Friday. Stress to him that if he thinks waiting a short period of time is safe you want to do further celiac disease testing. I hope he is the kind of doctor who will listen to you and I also hope you listen to him if he continues to recommend the test on Friday. Just my thoughts and how I would react and make a decision. Please keep us posted.

[ravenwoodglass]

I should add, since I didn't in my last reply, that I agree with the other poster about getting the bone marrow testing done. If your doctor suspects myeloma that should be ruled out. I would try the diet in addition though, after you have done all testing for celiac that you choose to do. Please let us know how things turn out.

[luvdogz]

Thank you both so much for your thoughts and time. I really appreciate it. I am for sure still doing the BMB. I want to find out what is going on in my marrow, plus I figure a hematologist wouldn't order a test such as that with out wanting to rule out something serious. I will def request further celiac testing though!

One thing I know is good is my vit d, so that is good, as well as my hemaglobin. Yet my iron sat and iron and ferritin(if memory serves) is low? That does fit with what he said about anemia of chronic disease. Is that part of celiac?

My IgA that is high is total IgA, elecrophoresis (sp) and immunofixation and my neg blood test was the transglutaminase Ab IgA<3. (ref . <5). If that helps clarify my lab tests any.

Also is having elevated platelets part of celiac? Does celiac cause so many lab abnormailies?

I am ready to be done with this BMB, of course I am scared of the pain, who wouldn't be But my mind will be at rest when it comes up negative for anything! Myself and my family just can't believe it will be myeloma....Denial is a great thing sometimes! Something is wrong though, just haven't figured it out yet.

I will def keep you update with the results. Thanks again for your thoughts!

[lovegrov]

I can't remember all of my abnormalities but they including elevated liver enzymes, low iron (BAD anemia) and potassium, and many, many others. I also had the flu-like achiness and even ran fevers to 105. Everything I ate tasted like metal. I had many, many of your symptoms. All caused by celiac. However, they also did the BMB on me because they were convinced I had lymphoma. Compared to that, I was happy to have celiac.

Before the biopsy the doctor gave me something IV to make me happy enough that I really didn't care what he did and then he numbed the area. There was a little pain but it was more of a feeling of pressure than pain. Sore for a couple of days but nothing too bad.

[luvdogz]

I can't remember all of my abnormalities but they including elevated liver enzymes, low iron (BAD anemia) and potassium, and many, many others. I also had the flu-like achiness and even ran fevers to 105. Everything I ate tasted like metal. I had many, many of your symptoms. All caused by celiac. However, they also did the BMB on me because they were convinced I had lymphoma. Compared to that, I was happy to have celiac.

Before the biopsy the doctor gave me something IV to make me happy enough that I really didn't care what he did and then he numbed the area. There was a little pain but it was more of a feeling of pressure than pain. Sore for a couple of days but nothing too bad.

lovegrov, that is so true I would be so happy if it turns out to be "just" celiac. Not many things have a cure which we can control!

May I ask how you were finally diagnosed? How soon after going gluten-free did you start to notice improvement?

Unfortunately my Dr doesn't do anything other than lots of local, he said it is simply not worth the risk. Mostly will feel pressure, but he said the worse is the sucking out of the actual marrow and that lasts for the count of 3. I suppose I can handle anything for 3 seconds!

[Gemini]

Thank you both so much for your thoughts and time. I really appreciate it. I am for sure still doing the BMB. I want to find out what is going on in my marrow, plus I figure a hematologist wouldn't order a test such as that with out wanting to rule out something serious. I will def request further celiac testing though!

One thing I know is good is my vit d, so that is good, as well as my hemaglobin. Yet my iron sat and iron and ferritin(if memory serves) is low? That does fit with what he said about anemia of chronic disease. Is that part of celiac?

My IgA that is high is total IgA, elecrophoresis (sp) and immunofixation and my neg blood test was the transglutaminase Ab IgA<3. (ref . <5). If that helps clarify my lab tests any.

Also is having elevated platelets part of celiac? Does celiac cause so many lab abnormailies?

I am ready to be done with this BMB, of course I am scared of the pain, who wouldn't be But my mind will be at rest when it comes up negative for anything! Myself and my family just can't believe it will be myeloma....Denial is a great thing sometimes! Something is wrong though, just haven't figured it out yet.

I will def keep you update with the results. Thanks again for your thoughts!

I few notes on my experience with this......you stated they did the SPEP blood work on you, which tests for abnormal protein levels. Did this come back normal or elevated? This is the test that would screen for myeloma and usually, elevated protein levels, along with monoclonal bands present would strongly indicate a possibility of myeloma. The BMB is a very serious test and should only be done if completely warranted. Doctors tend to look for the most serious of the disease spectrum, which can unnecessarily scare a patient witless, unfortunately!

Monoclonal essentially means one cell and that would indicate a cancerous condition. I had elevated protein levels but there were no monoclonal bands present so my hematologist ruled that out without resorting to a BMB. And, yes, Celiac Disease can absolutely cause all the symptoms you have but they will not look for that unless you press them to. I also gave the hematologist an education on Celiac Disease and told her that any patient presenting with any autoimmune diseases should be screened for Celiac and not be scared into thinking it's cancer. She listened and was very interested in what I had to say.

One of the better doctors I have met in my lifetime!

I am not sure why a doctor would think you had myeloma from rising total IgA. My IgA at one point was over 2000 and no one could figure that out but cancer was never mentioned as an option. My total IgA is much, much lower now because of diagnosis and the gluten-free diet. My protein levels are also now in the normal range, also due to the gluten-free diet.

Take a deep breath and have positive thoughts. You sound like an undiagnosed Celiac so try not to worry too much, if you can. I would absolutely ask for medication to put you into a sleep for the procedure. It can be painful but all those who had meds said it made all the difference in the test so you have options here. Tell the doctor you want to be comfortable!

My best to you and keep us updated. Sounds like you need a dietary trial so please keep that option open, even if testing comes back negative.

[luvdogz]

I few notes on my experience with this......you stated they did the SPEP blood work on you, which tests for abnormal protein levels. Did this come back normal or elevated? This is the test that would screen for myeloma and usually, elevated protein levels, along with monoclonal bands present would strongly indicate a possibility of myeloma. The BMB is a very serious test and should only be done if completely warranted. Doctors tend to look for the most serious of the disease spectrum, which can unnecessarily scare a patient witless, unfortunately!

Monoclonal essentially means one cell and that would indicate a cancerous condition. I had elevated protein levels but there were no monoclonal bands present so my hematologist ruled that out without resorting to a BMB. And, yes, Celiac Disease can absolutely cause all the symptoms you have but they will not look for that unless you press them to. I also gave the hematologist an education on Celiac Disease and told her that any patient presenting with any autoimmune diseases should be screened for Celiac and not be scared into thinking it's cancer. She listened and was very interested in what I had to say.

One of the better doctors I have met in my lifetime!

I am not sure why a doctor would think you had myeloma from rising total IgA. My IgA at one point was over 2000 and no one could figure that out but cancer was never mentioned as an option. My total IgA is much, much lower now because of diagnosis and the gluten-free diet. My protein levels are also now in the normal range, also due to the gluten-free diet.

Take a deep breath and have positive thoughts. You sound like an undiagnosed Celiac so try not to worry too much, if you can. I would absolutely ask for medication to put you into a sleep for the procedure. It can be painful but all those who had meds said it made all the difference in the test so you have options here. Tell the doctor you want to be comfortable!

My best to you and keep us updated. Sounds like you need a dietary trial so please keep that option open, even if testing comes back negative.

Hi Gemini, thank you for your thoughts and experiences.

Yes, at one time I did have a m-spike I believe they called it, about 1.5 years ago. I continue to have (I have my recent lab infront of me) a high, Beta band 1.21 (0.60-1.05). Not sure if that is the spike or not?

I was really surprised when he mentioned myeloma too! The rheumy I just saw for the first time recently, doesn't think it is either, but she said she will defer to his expertise on this one. SHe wants to wait to see what the results are, and then proceed from there. If my hematologist won't run a celiac panel, I am certain she will. I really liked her, and she is very open minded and not one to jump to worse case scenerios!

I know for a fact he won't give me anything for the procedure though, I already asked. He just simply doesn't do it. At this point I just want it over!

Thanks for the kind words and I will try to stay positive.

[Gemini]

Hi Gemini, thank you for your thoughts and experiences.

Yes, at one time I did have a m-spike I believe they called it, about 1.5 years ago. I continue to have (I have my recent lab infront of me) a high, Beta band 1.21 (0.60-1.05). Not sure if that is the spike or not?

I was really surprised when he mentioned myeloma too! The rheumy I just saw for the first time recently, doesn't think it is either, but she said she will defer to his expertise on this one. SHe wants to wait to see what the results are, and then proceed from there. If my hematologist won't run a celiac panel, I am certain she will. I really liked her, and she is very open minded and not one to jump to worse case scenerios!

I know for a fact he won't give me anything for the procedure though, I already asked. He just simply doesn't do it. At this point I just want it over!

Thanks for the kind words and I will try to stay positive.

I am not sure of the specifics regarding the significance of a Beta band but it would be pretty weird for you to have an M spike for 1 1/2 years (that's a long time) and be walking around with myeloma without being really sick. I have a friend who is undergoing treatment for myeloma now and he was very sick at time of diagnosis. His case was very clear cut with regards to testing.

Sounds like you have a decent rheumatologist and it's comforting to have someone who keeps their head on straight and doesn't jump to worst case scenarios all the time. Many things can cause your symptoms and a spiking IgA is so indicative of Celiac, that should have been the first clue.

Out thoughts will be be with you tomorrow....hang in there!

[luvdogz]

I am not sure of the specifics regarding the significance of a Beta band but it would be pretty weird for you to have an M spike for 1 1/2 years (that's a long time) and be walking around with myeloma without being really sick. I have a friend who is undergoing treatment for myeloma now and he was very sick at time of diagnosis. His case was very clear cut with regards to testing.

Sounds like you have a decent rheumatologist and it's comforting to have someone who keeps their head on straight and doesn't jump to worst case scenarios all the time. Many things can cause your symptoms and a spiking IgA is so indicative of Celiac, that should have been the first clue.

Out thoughts will be be with you tomorrow....hang in there!

Uggg! I just called the rheumy's office and asked if the Dr. can order a full celiac panel, as I have only had the transglutamine (sp) one. She said the dr. isn't in today, but that all they ever order is that one! She said she has never heard of a panel! How come I know more about this than they do, just from surfing the net? She went and asked the gastro person in the office and they only ever order what I already have had done. She said she will ask the dr and get back with me, no wonder why it is so hard to get diagnosed in this country. Frustrating.

From what little I have learned about m-spikes and myeloma, apparently there are different stages, that can last for long periods of time, and something called MGUS, where they basically just keep an eye on the numbers, and do no treatment. Good news is, they have made a lot of progress in regards to treatment, and a good majority of patients are now at 10+ years. But I won't have to worry, because I am sure I will be negative.

Ok, I have to leave pretty soon, thanks for the good thoughts. It sounds like I should know something by Monday.

[cyberprof]

Uggg! I just called the rheumy's office and asked if the Dr. can order a full celiac panel, as I have only had the transglutamine (sp) one. She said the dr. isn't in today, but that all they ever order is that one! She said she has never heard of a panel! How come I know more about this than they do, just from surfing the net? She went and asked the gastro person in the office and they only ever order what I already have had done. She said she will ask the dr and get back with me, no wonder why it is so hard to get diagnosed in this country. Frustrating.

From what little I have learned about m-spikes and myeloma, apparently there are different stages, that can last for long periods of time, and something called MGUS, where they basically just keep an eye on the numbers, and do no treatment. Good news is, they have made a lot of progress in regards to treatment, and a good majority of patients are now at 10+ years. But I won't have to worry, because I am sure I will be negative.

Ok, I have to leave pretty soon, thanks for the good thoughts. It sounds like I should know something by Monday.

Luvdogs, you've probably left for the appointment but I wanted to send you good wishes. My DH was diagnosed with MGUS when he was only 43 and now has progressed a bit, but still below the full Myeloma diagnosis...sort of in limbo. And to the other posters, he has had a high monoclonal protein spike for years, that's the diagnosis of MGUS as a precursor to myeloma.

For those of you who are familiar with the celiac tests, I belive the IgA that evidences myeloma is different than the IgA tests for celiac. Myeloma can be IgM, IgA, IgE or IgG predominant (plus a few others).

That being said, there is some evidence that Multiple Myeloma is an EXTREME case of celiac and that going gluten-free can prevent MGUS from turning into Myeloma and prevent Myeloma from getting worse. There are even some reports of individuals whose blood is totally clear of monoclonal proteins after going gluten-free. See this celiac.com article for the true Pub-Med links. https://www.celiac.com/articles/21542/1/Cel...eins/Page1.html Take these Pub-Med articles to your doctor for ammunition.

So if you are diagnosed with myeloma or MGUS (but not celiac) I would strongly endorse going gluten-free. It can

[Gemini]

Luvdogs, you've probably left for the appointment but I wanted to send you good wishes. My DH was diagnosed with MGUS when he was only 43 and now has progressed a bit, but still below the full Myeloma diagnosis...sort of in limbo. And to the other posters, he has had a high monoclonal protein spike for years, that's the diagnosis of MGUS as a precursor to myeloma.

For those of you who are familiar with the celiac tests, I belive the IgA that evidences myeloma is different than the IgA tests for celiac. Myeloma can be IgM, IgA, IgE or IgG predominant (plus a few others).

That being said, there is some evidence that Multiple Myeloma is an EXTREME case of celiac and that going gluten-free can prevent MGUS from turning into Myeloma and prevent Myeloma from getting worse. There are even some reports of individuals whose blood is totally clear of monoclonal proteins after going gluten-free. See this celiac.com article for the true Pub-Med links. https://www.celiac.com/articles/21542/1/Cel...eins/Page1.html Take these Pub-Med articles to your doctor for ammunition.

So if you are diagnosed with myeloma or MGUS (but not celiac) I would strongly endorse going gluten-free. It can

[luvdogz]

Thank you for this outstanding tutorial on M spikes, in layman's terms! Good information to have. I had elevated protein levels with no M spikes pre-diagnosis for Celiac and now my serum protein level is normal. I guess that's strong evidence that the diet is important.

My best to your husband with his health! My friend who is being treated for myeloma is as Irish as they come and now I suspect that could be the reason for his myeloma diagnosis. He is in his 60's. I doubt they would understand the importance of being screened, though. So many people do not get the food connection to illness.

Yes, thank you cyberprof for that information, very helpful, and timely too.

Well my BMB wasn't too bad. The worst part was feeling the initial sting of the local. I barely even felt the BMB, felt pressure and a funny feeling that is hard to describe. But all in all not as bad I had feared!

My problem was afterwards...I won't go into details, because I don't want to scare anyone who is reading this and needs to have a BMB done. But I had a very severe, very rare reaction to the lidoccaine. Apparently too much, and given too fast, and off to the hospital I went! Lots of Benadryl, and terrifing my poor Mom, who is a RN by the way, and I am fine, just a bit sore on the back side.

You just never know who is going to react to what and when. Please know I am a very rare case, and the paramedics and nurses and Drs, where very surprised by this, they were great tho!

I must say I now highly recommend NEVER go to a procedure alone, no matter how minor it may be. My mother and I are terrified to think what could have happened had I been alone in that parking lot, helpless.

I will find out the results on Jan 4th.

Thanks for all of your info and time, and I will keep you updated.

[mushroom]

Scary stuff, luvdogz, these idiosyncratic reactions to things. Thank goodness for good ole mom!

Have a great Christmas and holiday and we will hear from you in the New Year.

[luvdogz]

Scary stuff, luvdogz, these idiosyncratic reactions to things. Thank goodness for good ole mom!

Have a great Christmas and holiday and we will hear from you in the New Year.

Well, I got the good news today, BMB was completely negative! Whew! Now that I am so relieved by the results, and wondering why the Dr made me wait until my appt. couldn't he have called? Oh well! Now I am wondering, what now?

I must say I am tired of dealing with tests and appointments and waiting. I am also tired of feeling like heck. My Dr wants to retest in 6 months to keep track of that IgA. I am feeling like I should go gluten free for those 6 months to see how I feel, and also see if my blood tests improve?

It is not so easy to get the full celiac panel I am finding, so what better way than to see if I respond? I had done it for 2-3 months before, and swore I looked and felt better. I got so discouraged by that one Dr who looked at that one test and said I don't have Celiac or gluten intolerance, so I might as well not do it, that is not what is wrong with you... I know I shouldn't have let that sway me, but it made me feel so stupid!

Any thoughts? Thanks, and I wish everyone a happy new year!

[cyberprof]

Well, I got the good news today, BMB was completely negative! Whew! Now that I am so relieved by the results, and wondering why the Dr made me wait until my appt. couldn't he have called? Oh well! Now I am wondering, what now?

I must say I am tired of dealing with tests and appointments and waiting. I am also tired of feeling like heck. My Dr wants to retest in 6 months to keep track of that IgA. I am feeling like I should go gluten free for those 6 months to see how I feel, and also see if my blood tests improve?

It is not so easy to get the full celiac panel I am finding, so what better way than to see if I respond? I had done it for 2-3 months before, and swore I looked and felt better. I got so discouraged by that one Dr who looked at that one test and said I don't have Celiac or gluten intolerance, so I might as well not do it, that is not what is wrong with you... I know I shouldn't have let that sway me, but it made me feel so stupid!

Any thoughts? Thanks, and I wish everyone a happy new year!

I'm so happy for you that your BMB was clear and you don't have MGUS or worse.

Regarding the celiac tests: Medical science isn't that perfect and celiac seems to be an area where docs don't know too much and the tests aren't perfect either. In my opinion you should ignore a doc that tells you to eat wheat/gluten if you have evidence from your own response that wheat/gluten is bad for you. It is a hard diet, true, but not THAT hard and it is certainly as healthy (or more healthy) than a typcial American diet. So try the diet and if you are still sick, perhaps you have other food intolerances. Or you may have something else to check into such as an(other) autoimmune disease, colitis or whatever. But a doc shouldn't tell you that because you're still sick that wheat/gluten isn't the cause. Just my two cents worth. Good luck!

[ravenwoodglass]

Well, I got the good news today, BMB was completely negative! Whew! Now that I am so relieved by the results, and wondering why the Dr made me wait until my appt. couldn't he have called? Oh well! Now I am wondering, what now?

I must say I am tired of dealing with tests and appointments and waiting. I am also tired of feeling like heck. My Dr wants to retest in 6 months to keep track of that IgA. I am feeling like I should go gluten free for those 6 months to see how I feel, and also see if my blood tests improve?

It is not so easy to get the full celiac panel I am finding, so what better way than to see if I respond? I had done it for 2-3 months before, and swore I looked and felt better. I got so discouraged by that one Dr who looked at that one test and said I don't have Celiac or gluten intolerance, so I might as well not do it, that is not what is wrong with you... I know I shouldn't have let that sway me, but it made me feel so stupid!

Any thoughts? Thanks, and I wish everyone a happy new year!

I am so glad the test came out negative. I am sorry you had to go through it but glad the reaction was addressed and taken care of. Yes do get on the diet, it won't hurt and may make an incredible difference. I don't understand why your doctors won't run a full panel on you but at this point hopefully your bodies response to the diet will give you the answers you need.

[Gemini]

Well, I got the good news today, BMB was completely negative! Whew! Now that I am so relieved by the results, and wondering why the Dr made me wait until my appt. couldn't he have called? Oh well! Now I am wondering, what now?

I must say I am tired of dealing with tests and appointments and waiting. I am also tired of feeling like heck. My Dr wants to retest in 6 months to keep track of that IgA. I am feeling like I should go gluten free for those 6 months to see how I feel, and also see if my blood tests improve?

It is not so easy to get the full celiac panel I am finding, so what better way than to see if I respond? I had done it for 2-3 months before, and swore I looked and felt better. I got so discouraged by that one Dr who looked at that one test and said I don't have Celiac or gluten intolerance, so I might as well not do it, that is not what is wrong with you... I know I shouldn't have let that sway me, but it made me feel so stupid!

Any thoughts? Thanks, and I wish everyone a happy new year!

I am soooooooooo happy that everything worked out well for you, luvdogz! Having been there myself, I know the anxiety level it puts you into. As far as the going gluten-free, I would and not look back. Celiac can absolutely cause very wonky blood work, especially protein related abnormalities, and now that you know you do not have anything really bad, I would go gluten-free and you may be surprised to see, down the road, your levels normalizing. I am surprised that a medical person would not see the correlation between rising IgA levels and Celiac Disease but that's the mentality we are stuck with today. My IgA was in the 2,000 range about 12 years ago, way before I had a diagnosis but had flaming symptoms of Celiac. No one knew what to do or why that was. Hindsight is 20/20!

[luvdogz]

I am soooooooooo happy that everything worked out well for you, luvdogz! Having been there myself, I know the anxiety level it puts you into. As far as the going gluten-free, I would and not look back. Celiac can absolutely cause very wonky blood work, especially protein related abnormalities, and now that you know you do not have anything really bad, I would go gluten-free and you may be surprised to see, down the road, your levels normalizing. I am surprised that a medical person would not see the correlation between rising IgA levels and Celiac Disease but that's the mentality we are stuck with today. My IgA was in the 2,000 range about 12 years ago, way before I had a diagnosis but had flaming symptoms of Celiac. No one knew what to do or why that was. Hindsight is 20/20!

Thanks everyone, I am very relieved, and I really appreciate your time and thoughts. I am definitely going to go gluten free. I am so sick of doctors and hoping they will help me feel better. Now that I know it is not mgus or myeloma, I feel I can really help myself with going gluten free and helping to heal myself! I may very well be preventing something very much worse down the line.

Gemini, wow 2000! Any idea if your numbers went down with going gluten free? Sometimes I feel like I am better informed on this subject than my Drs. When I read the sumptoms of Celiac and gluten intolerance, I fit sooo many of them.

I am ready to feel better, and it is great to feel ready to do it! It is all a mind set for me I think. Thanks again, and I plan on hanging around for tips and info from all of you.

[horsegirl]

Have you done the stool testing through Enterolab? My celiac panel (my doc ordered the entire thing) was negative despite doing a "gluten challenge" in which I consumed large amounts of gluten prior to the test, & felt like death warmed over. I figured between the positive results from Enterolab, & the improvements I got from being completely gluten free, I know I'm gluten intolerant & will never eat the stuff again.

[Gemini]

Thanks everyone, I am very relieved, and I really appreciate your time and thoughts. I am definitely going to go gluten free. I am so sick of doctors and hoping they will help me feel better. Now that I know it is not mgus or myeloma, I feel I can really help myself with going gluten free and helping to heal myself! I may very well be preventing something very much worse down the line.

Gemini, wow 2000! Any idea if your numbers went down with going gluten free? Sometimes I feel like I am better informed on this subject than my Drs. When I read the sumptoms of Celiac and gluten intolerance, I fit sooo many of them.

I am ready to feel better, and it is great to feel ready to do it! It is all a mind set for me I think. Thanks again, and I plan on hanging around for tips and info from all of you.

Yes, all my numbers are in the normal range now and my repeat testing measuring for gluten ingestion are on the low end of normal. At the time I had the ridiculous IgA numbers, I was totally messed up, my allergies were out of control, I was sick all the time and when the blood testing came back, the doctors were dumbfounded and didn't know what to do to help me. I began to suspect then that the AMA were not good at chronic disease diagnosis and treatment! All I can say is, go with your gut feelings and never doubt your intuition. I have 4 autoimmune diseases total, figured them all out by myself and went into the doctors and requested testing. I actually had a few doctors who got angry with me because I figured it out before they did. I fired them and moved on and eventually found some good doctors who I now go to. They do exist but it took me 20 years to find them!

[luvdogz]

Yes, all my numbers are in the normal range now and my repeat testing measuring for gluten ingestion are on the low end of normal. At the time I had the ridiculous IgA numbers, I was totally messed up, my allergies were out of control, I was sick all the time and when the blood testing came back, the doctors were dumbfounded and didn't know what to do to help me. I began to suspect then that the AMA were not good at chronic disease diagnosis and treatment! All I can say is, go with your gut feelings and never doubt your intuition. I have 4 autoimmune diseases total, figured them all out by myself and went into the doctors and requested testing. I actually had a few doctors who got angry with me because I figured it out before they did. I fired them and moved on and eventually found some good doctors who I now go to. They do exist but it took me 20 years to find them!

Gemini, it sounds like we have a lot in common! I have really bad allergies too and a lot of Drs think I have said I have an autoimmune disease brewing, just can't conclude what and when it will be. Scary stuff, hopefully I may be able to prevent that from occuring. I am glad you stood up for yourself and also found some of the good doctors. Its good to know your numbers improved too. Thanks for your story, it helps in making this decision to go gluten free.

Horsegirl, I haven't done the enterolab testing. Don't know too much about it or how reliable it is? I guess at this point I feel ready to begin going gluten-free, and am so tired of testing and spending $ spinning my wheels. I have already cut back on the gluten items I am eating, not sure if that would affect the results or not. I don't want to throw out everything in the kitchen, but am not buying anymore gluten filled items, so I guess I am kind of weaning myself. Didn't have that much in the pantry anyway, so I should be completley gluten-free in a week or so. Thanks for your thoughts. I am glad you are feeling better, I am looking forward to that as well!