[AConSmith]

My ailing 24 yo son has been going from doc to doc for about 8 miserable years. As of late in the last few months, in addition to chronic diarrhea with some vomiting, stomach pain, weight loss, sleep problems, headaches, fatigue, depression, and terrible joint and muscle aches that he describes as having the flu 24/7-- I have become aware of the very potential possiblity of it being Celiac Disease. His big deal gastroenterologist in Boston who he had to wait 2 pain filled months to see said, "Ah, it cannot be Celiac Disease because you have pain and there is no pain with celiac disease!!" So there you go -- another well informed specialist. By then we had encouraged him to eliminate Gluten and after trips with him to Whole Foods and Trader Joes, he did so albeit reluctantly, but did not feel any better. Was he pure enough? I don't know and perhaps that was a problem. In addition, he had colonoscopy and endoscopy and biopsy last week from same doc and it all showed NOTHING. I realize too, it was a mistake for him to have been off of Gluten before that, and he quick ate wheat for a few days ahead of the test! Now, that doc has gone on vacation and left him high and dry and in continue wretched pain. He has him scheduled for a Cat Scan this Friday and we are not sure whether to proceed. He now does nothing more than go to work and then home to bed.

Two questions for this list -- One is - I made an appt for him at Beth Israel Deaconess -- wanted to get into see Dr. Kelly to no avail, then had one with Dr. Sheth which I canceled when I read more about him and now have an appt with Dr. Leffler but not for three more weeks! Anyone know if he is great and on the mark? We cannot go to anymore misled docs. Also, was trying to get into Dr. Green's group in Columbia Medical Center and could only see Dr. Tennyson there. Is she better?

My other question is this -- a friend of his has now convinced him that perhaps it is Lyme Disease -- either latent and reoccured from his childhood or a new bout. Symptoms can be similar to celiac disease. Anyone know anything about this and when he finally gets into a Celiac Center can they also test well for this? Or, do we need to start all over again with another difficult to diagnose disease?

Thank you so much, Worried to death mother in Raleigh, NC with son in Boston, MA

[Lisa]

Hello A!

So glad that you have found us.

It's recommended that a person consume 3-4 slices (or equivelent) of bread a day for 6-8 weeks prior to testing, if previously gluten free. In addition, no testing is considered 100%. As you know, your son should be on a full gluten diet until testing is exausted, or he is.

I would think that a priority at the moment is to relieve his pain. A simple diet of unprocesses food such as meats, seafood, rice, potatoes, fresh veggies and fruit might offer him some relief for the time being.

Any primary care doctor can order the blood work. This is the full panel needed providing your son is still consuming gluten:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.


I'm not familiar with the doctors that you mentioned, but someone else may be. I hope ou find your answers soon.

[Mtndog]

AConSmith, on Aug 3 2009, 09:39 PM, said:

Two questions for this list -- One is - I made an appt for him at Beth Israel Deaconess -- wanted to get into see Dr. Kelly to no avail, then had one with Dr. Sheth which I canceled when I read more about him and now have an appt with Dr. Leffler but not for three more weeks! Anyone know if he is great and on the mark? We cannot go to anymore misled docs. Also, was trying to get into Dr. Green's group in Columbia Medical Center and could only see Dr. Tennyson there. Is she better?

My other question is this -- a friend of his has now convinced him that perhaps it is Lyme Disease -- either latent and reoccured from his childhood or a new bout. Symptoms can be similar to celiac disease. Anyone know anything about this and when he finally gets into a Celiac Center can they also test well for this? Or, do we need to start all over again with another difficult to diagnose disease?

Thank you so much, Worried to death mother in Raleigh, NC with son in Boston, MA

Wow- this story sounds familiar! In too many ways. I have both Lyme and celiac. I was diagnosed with celiac by Dr Cheney at Beth Israel (she also practices at their extension in Bedford). SHE IS AMAZING!!!!!!!!!!!!!!!!!!!!!!!!!!!! I don't know Dr Sheth but Dr Cheney has heard all my symptoms and never said "It can't be celiac" because of any of them. My first and second biopsies were negative. Because after going gluten-free for two years I did not get completely better, she wanted to rule out refractory sprue. She even took tissue for examination by Igenix, a Lyme lab. She went above and beyond anything I would have expected from a GI.

When everything came back negative, biopsy wise, the first time, she based my diagnosis on my severe reaction to gluten and the genetic panel (she would not ask me to do a gluten challenge because of how sick it makes me. The second time, when she ruled out colitis and refractory sprue she agreed I should pursue real Lyme testing (a whole other subject).

See this Celiac.com thread on Lyme disease for more info on Lyme testing. They will not test him for Lyme at the Celiac Center.

If you want a "firm" celiac diagnosis by biopsy, I would wait to eliminate gluten until after his appt (I know, I didn't but it might help). If you don't need a firm diagnosis, then encourage him to go gluten-free and stay that way. See if they can do the gentic test rather than the biopsy. See if he gets better.

If you are not satisfied with your appt make one withe Dr Cheney. It could be celiac, or Lyme or both. Unfortuantely, they both can cause the symptoms he's having because I have them all.

I'm not sure where you live, but I can recommend doctors that will do the CORRECT test for Lyme. This is essential...without it, you can't get a diagnosis. Email me through the board. If you have a problem doing that, let me know and I'll just post my email here.

hang in there, Beverly

[AConSmith]

OH PLEASE tell me how in the world to get an appointment with Dr. Cheney... My son called there today and was told nothing till November and that Dr. Cheney does not deal with Lyme Disease, to which he responded, "I believe she does and I also believe I have Celiac Disease." No appointments. He is so desperate at this point and finally was to be seen today by a new primary care physician at 4:00. When he dragged himself there, they said, "oops, you weren't put into the system so you cannot be seen till tomorrow." OMG. "You're fine anyway," they said, "your colonoscopy and endoscopy are negative." About to lose his mind, he left and has gone back to bed. We still cannot get in to see Dr. Leffler till 8/21 or Dr. Cheney till never.... Both at Beth Israel. Any ideas??? Thanks so much, Ann

[Mtndog]

AConSmith, on Aug 4 2009, 05:14 PM, said:

OH PLEASE tell me how in the world to get an appointment with Dr. Cheney... My son called there today and was told nothing till November and that Dr. Cheney does not deal with Lyme Disease, to which he responded, "I believe she does and I also believe I have Celiac Disease." No appointments. He is so desperate at this point and finally was to be seen today by a new primary care physician at 4:00. When he dragged himself there, they said, "oops, you weren't put into the system so you cannot be seen till tomorrow." OMG. "You're fine anyway," they said, "your colonoscopy and endoscopy are negative." About to lose his mind, he left and has gone back to bed. We still cannot get in to see Dr. Leffler till 8/21 or Dr. Cheney till never.... Both at Beth Israel. Any ideas??? Thanks so much, Ann

Yeah- I had to wait 6 months to get an appt with her. I'm sorry if I misinformed- Dr Cheney does NOT deal with Lyme. She deals with celiac. It was just that after she ruled out everything else, she was open to the idea that it could be Lyme. I had to give her the kit/info for the Lyme biopsy while she was "in there". She is a wonderful woman.

But if you want to make an appt with her, try calling her Lexington office (on the Bedford Line) Office. Here's a link to the Bio on her and the Lexington number. Ask to be put on a waiting list.

[pssmith2]

Hi all,

I am Ann's son in Boston and am desperately seeking a doctor knowledgable in celiac/lyme's disease. The Primary Care Physician I am scheduled to see tomorrow is affiliated with Brigham and Women's Hospital. Does anyone know of a good doctor to see if I am referred there? I will continue seeking help at Beth Israel, but figured I should check on some names if Brigham provides a better opportunity for me to be seen.

Thank you so much (especially you, Beverly!) for your help.

Pete

[jamied]

reading these posts is heartbreaking, there is nothing worse than feeling terrible and being told yr fine.

my newest batch of prob's began in Oct 08...left hand fingertips turned purply-red, hot, and i couldnt touch anything, it was like someone put a cigar out on every fingertip....swollen.... local rheuma put me on anti-malari Rx and 1600mg of ibuprofen (im barely 100lbs.)....bc she was unsure what the heck was going on....meds which did nothing....was put on percocets..they couldnt find anything wrong except a very elevated inflammatory marker....the kicker was NO ONE WAS CONCERNED about this one whackyness....(ps. gluten sensitivity/celiac causes these markers to rise in the presence of ....wheat)

by Easter i could barely walk, correction, i couldnt climb stairs in my own house, spent Good Friday at 2drs offices...
..apparently based on my bloodwork...my antibody load was 256-1 for erlichiosis which prompted my dr in CT to send me to Yale....everyone was up in arms over it.

Yale dr looked at 10 YEARS of bloodwork (yes i have been sick for THAT long w/out a 'real' diagnosis) and came up with Fibromyalgia...which bears a close resemblance to .....lyme!! he suggested i 'read up' and change my lifestyle (work, play, diet)....funny i've had mri's, cat scan, nuclear gut tests, blood work, endo's, etc....

yalie said if you are ill and have had lyme before, chances are it will always show up cuz yr soliders are preparing to battle inside yr body.
and of course, my blood work came back so normal, the dr said this is abnormal based on my history...

ok. dietary changes....i cut out 99% of gluten for last 10wks (didnt have testing, and frankly not willing to eat 4slices a bread a day for weeks to be sick again) and i am a different person, in a GREAT way. no more stomach pains and all the fun that goes with that, no headaches, 75% less body,muscle pain....

in this society it seems u need an army of dr's to find relief!!!

it is a daily struggle to live a normal life, but honestly the DRASTIC diet changes is the best i've felt in over a decade...

[AConSmith]

So my son Peter went to see this new Boston, GP who came highly recommended. He felt that having a GP for most of the referrals would be helpful and since he feels he really needs to be hospitalized, he would then have an "official" doctor. This was worse than ever -- this guy basically said that Lyme and Celiac are not recognized by the medical community nor by him and that Peter should just go on antidepressants cause he is fine -- having had a normal looking colonoscopy and endoscopy. Peter responded with, "I cannot believe you are saying this. I have lost 20 lbs in two months, am in chronic pain in muscles, joints, and stomach, headaches all the time, diarrhea all the time, fearing losing my job cause I can no longer even work and am only 24 years old and you are telling me I am fine and need antidepressants??!!" It is all like a really bad movie. The jerk doc took more blood, God only knows for what and dismissed my dear, sick son who at that point, began to fall apart and asked the doc to just "call my mother." He will call tomorrow, but really what is there to say to this idiot and why would I waste my time? I have managed today to get Beth Israel to change his appt from 8/21 to 8/14 which I thought was some improvement, with Dr. Leffler in Celiac Center there. But, it still seems unbearably far away for Peter. How do we not lose our minds at this point? Thanks, Ann

[Mtndog]

Ann- Your story sounds like so many others here. You need to take charge. At this point, he is suffering and help is not in immediate sight. If you can't wait, Just have him go gluten-free- you don't need a diagnosis to do this. I didn't wait (I too had lost 20 pounds) and it probably saved me from getting even sicker.

Also, here is a Lyme Disease Association Doctor Referral Database where you can find a doctor that can test/treat Lyme.

With celiac and Lyme, this will not go away overnight. I know how much that stinks, but have hope. He will get better.......

[SLB5757]

This is a terribly sad story. I am 32 now, but struggled with these types of issues since the birth of my little guy (who is now 4). So I guess I was about 28 when it came to it's worst point. I had dropped 10 lbs. in a months time and was basically drinking ensure by the time I started feeling better. I didn't have any diagnosis, but my body almost self-regulated and made me only eat non gluten things because I would have diarreah if I didn't. I lost the 10 lbs and went down to 92 lbs. because I was only drinking ensure and eating some rice/applesauce when I could handle it. Again - even at 92 lbs. none of teh doctors were at all seeing my situation as "urgent" - so I relate to your son's situation. I also was told I needed anti-depressents and that it was basically in my head because I was a "healthy young woman". But the fact was I was in constant pain, had diarreah every day for 4 weeks solid, went down to 92 lbs and also was suffering at work as your son was. My best advice is to stay diligent and keep going to different docs until someone listens.

I really hope he starts feeling better. is he taking ensure? I really lived on them for a while there because I was so afraid to drop into teh 80's ;( I am a healthy 105 now - so in time - even without dr.s help I got better. My dad basically told me " Stacy - you will be sick no matter what, you will have diarreah no matter what - so start to live your life". I took his advice and just continued on with work and life in general and stopped focusing on the doctor stress and I finally started gaining some weight (of course the mainly rice diet helped bc it was naturally gluten free even though I didnt know it was the issue). I think until yur son gets in with his doctor on the 14th - he should push through to live life as normal as possible. Drink ensure to boost energy, go to movies, force himself to get outta bed and interact with family and friends - anything he can to stay busy and not worry about the medical stress. A positive outlook and mindset helps so much!

Good luck!

[JamieM]

I just read your story to my husband and he said "who is she talking about you" I also was told that I had Lyme Disease but come to find out I have Celiac. I just found out about 3 mths ago and so far so good. I do still feel sick at times and my joint and muscle pain have not gona away yet but I also have been suffering for years and thay think that there is irreversable damage. I also have PCOS and thought alot of not feeling well was from that. Celiac can lead to so many more things if not under control. Good luck and tell your son I'm praying for him.

[Fiddle-Faddle]

Excellent advice from Beverly above.

I know quite a few people who've had Lyme, and all except one (who was diagnosed within a few weeks of the tick bite) had to go off gluten, dairy, and aspartame (the sweetener in diet sodas--apparently, it has some kind of neuro effect in combo with the Lyme, or maybe even without the Lyme). One also swears that refined sugar and carbs are a problem.

I also agree that the first priority is to get him out of pain, so test or no test, diet is the first order of business. Steamed veggies, plain rice (if you prepare with chicken or beef broth, READ THE LABEL--many contain gluten), plain broiled fish, meat, and chicken, and fresh fruit. Sounds extremely limiting, I know, but if it brings relief, it's worth it.

Second priority is to find a doctor who believes in both Lyme and celiac--sounds like you got more than one nut case, but unfortunately, even in Boston (close to Lyme, CT!), there will be lousy doctors. Beverly's link ought to find you someone who knows how to test/treat Lyme. As for the celiac, if the diet works, that's the best test there is--both blood work and biopsies can be false negatives, but a positive dietary response for symptoms that severe counts for more than any paper to the suffering patient!

[T.H.]

Jamie,
When you spoke of your joint and muscle pain, I figured I would just mention something that's been happening to me since I've been gluten-free. I'd been having really bad issues with aches and pains, as I did before the gluten-free diet, but on my gluten-free diet I had to cut all my foods to the most basic (plain grains and fruits and veggies, etc...). After keeping a food log, I found a link between some of the foods I was eating and the aches and pains in certain places. Once I cut those foods from my diet, too, the aches and pains go away. I don't know how common this might be, but I mention it in case it might be affecting you as well!

Take care,
T.H.

JamieM, on Aug 16 2009, 12:02 PM, said:

I just read your story to my husband and he said "who is she talking about you" I also was told that I had Lyme Disease but come to find out I have Celiac. I just found out about 3 mths ago and so far so good. I do still feel sick at times and my joint and muscle pain have not gona away yet but I also have been suffering for years and thay think that there is irreversable damage. I also have PCOS and thought alot of not feeling well was from that. Celiac can lead to so many more things if not under control. Good luck and tell your son I'm praying for him.

[Tiff]

Hello there,

I have also been going to doctor after doctor to figure out what is going on with me.

Throughout my experience with doctors they told me that nothing was wrong and I also needed to be on anit-depressants and start going to a counselor. Of course, I didn't listen and refused the anti-depressants. I am currently seeing a wonderful homeopathic doctor. He has put me a detox program. I have been gluten free for 3 months now, and I still have pain everyday. I have not been officially diagnosed with celiac, but I may have a gluten intolerance.

I just wanted to share with you that your son may have a vitamin deficiency. I also had severe joint pain, headaches, nausea, diaherra, and many more symptoms. My doctor tested me for vitamin d deficiency and sure enough I had a severe Vitamin D deficiency. Once the doctor prescribed a vey high amount of vitamin D I started to feel better. However, I don't think the deficiency is getting to the root of my problem. I'm just suggesting that you ask the doctor to test for vitamin deficiencies. You would be suprised how much a vitamin deficiency can affect your life.

Good luck,
TIFF

[madaboutgluten]

Wow! Get your son off gluten if he will listen, don't wait for a doctor's diagnosis. If he is intolerant, the gluten is causing tissue damage everytime he consumes it. It took my daughter complaining to doctor's for almost two years before she finally saw a specialist that diagnosed her with celiac. At the time I had been told that I had fibromyalgia and was only functioning about 2 hours a day. I began doing research online.
Once I educated myself on the disease, I was sure it was causing my medical problems, also. The blood test showed that I didn't have it, but six months later my GP sent me back to the digestive health specialist because of elevated liver enzymes. After explaining my suspicions about the disease, due to: my daughter's diagnosis, high incidence of thyroid in the
family, and my brother John's colon cancer (which this disease can lead to), she told me to consume at least 2 pieces of bread a day for a
month and come back for an endoscopy. It turned out that I have it. This disease has 0-200 different symptoms and can be different for everyone. They have now found that it is not just
gastrointestinal. It is a multi-symptom, multi-organ disease and not many doctors are educated on this. Most doctors that I have run into just think it is weight loss and diarrhea, but there is so much more to it. Here are some sites that might help
> www.celiac.org
> www.gluten.net
>
It's too late for brother John, but my brother Mike who developed heart disease and diabetes discovered that he has it. My sister also
found that she has the disease. Outside of my immediate family, Shawn my cousin has also discovered that going gluten free has stopped his IBS
and many other symptoms. I do tend to go on and on about this because it could save so many health problems. I suspected my one year old grandson
of having it because of colic and other symptoms that my children had (that I didn't connect at the time). Anyway, I talked enough that my
daughter-in-law began to suspect that she had it even though she had very few symptoms. Since she works in the medical field she just told
the doctor that she wanted to be tested, and her blood work confirmed it, but they did an endoscopy that didn't confirm it, so doctors told her she didn't have it.
My point is don't wait for doctors, so many other things may go wrong. Two of my brothers are dying because doctors didn't diagnose them and my sister and I sufferered horribly most of our lives. Not everything resolves immediately there may be other problems caused by the gluten intolerance so do follow up with a doctor and vitamin deficiencies can be the cause of many problems also. It has taken me two years to feel as good as I do but I still have irrepairable damage.