Doctor In Boston Experience

[poeticjul25]

Hey all--I just went to a gastroenterologist in Boston, Ma., and he is supposedly a celiac disease specialist. Well, let's just say that my experience was not at all positive, and I am frustrated to high heaven with all of these doctors who assume they know everything. Saying my symptoms: 20 lb. weight loss occurring over a span of one month, bloating, diarrhea, gas, stomach pains, gluten cravings, dizziness, nausea, fatigue, and bone pain, I was told that the autoimmune symptoms mentioned were not related to celiac disease, and that he did not think that I even had celiac disease, despite going through a positive IgA antibody test and a positive stool sample that showed antibodies. I did undergo a biopsy, but since I had only ingested gluten for two days, the test came back negative. Anyway, the doctor did not know what to do or say, despite ordering yet another blood test, which I am guessing is the IgG antibody test...I am still waiting for results on that one. He did not tell me what to do or where to go from here, unfortunately, and mentioned the gluten challenge, if the blood test came back negative. I am not sure if I want to put my body through that for an extended period of time, because the pain is so severe, but what does he know? He doesn't have to live inside my body for that time, and he doesn't know just how intolerable these symptoms truly are. I am just sick of getting bounced around from doctor to doctor, and being told that yes, I do have celiac disease, and then no, I do not have celiac disease. Which is it?? Needless to say, i left Boston feeling very confused, angry, frustrated and upset. This doctor only spent 5 minutes with me, if not less, and repeatedly interrupted me with his own comments. I might not be a celiac disease specialist, but I do know that some of the autoimmune symptoms I've been experiencing are indeed related to celiac disease, and I have a "gut" feeling (no pun intended) that I do have celiac disease. `I was told that: "well, we don't know", and that as a gastroenterologist he does not cover any other of those symptoms. I was just sick of all the hemming and hawing, and I was wondering if any of you experienced these same kinds of things... please let me know..I am so disappointed right now.

[gf4life]

MOST of us have very similar experiences to your own. It is the reason so many of us are self-diagnosed, or Enterolab diagnosed. The medical field as we know it is not prepared to deal with so many gluten intolerant individuals, bu the fact remains that we are here! I don't know what to suggest to you. It is your choice to be gluten-free or not, and it sounds like you feel better gluten-free. You would be very lucky to find a doctor who will diagnose you after a negative biopsy. My doctor didn't even want to do the biopsy after the negative bloodtest. She finally agreed and she says it was negative, but I'm not sure I believe her. Even if it was borderline, she would say negative just to prove she was right and I was wrong...

God bless,

Mariann

[zippyten]

Poeticjul25,

I am sorry that not only have you been feeling crummy, but then you have to be frustrated by the ignorance of so-called expertdoctors. I've been having lots of gastro, but also many auto-immune-type, symptoms such as you mentioned, and after bloodwork (IgG) showed raised antibodies (although not very high ones) my doctor diagnosed me as having celiac. He explained that although the biopsy was the "gold standard" for diagnosis, it is very possible for people to have celiac and not have a positive biopsy. (I'm going ahead with the endoscopy this week because after three weeks on the diet I"m still having symptoms and he wants to check for peptic ulcers as well.)

If you test positive in your bloodwork and your symptoms improve or disappear on a gluten-free diet, it would certainly seem that you have celiac. It sounds to me as if your doctor is stuck in what he probably learned in medical school, which is now known to be erroneous, that celiac is very rare in the U.S. It is now being established that it is in fact much more common here than previously thought, and in fact, many people go undiagnosed or misdiagnosed.

Anyway, the good thing is that your doctor is not in charge of your body, you are. If you decide to go on a gluten-free diet to see if you feel better, that's what you should do -- and if you get better, than the solution is clear. If you need more proof for insurance purposes or your own peace of mind, I know that many people on this board swear by Enterolab and their very good test system for celiac, which you can do by yourself, apparently, through the mail without a doctor. I'm sure there are lots of people who can relate their experiences with this. But don't give up. This is a disease that presents itself in many different ways -- your symptoms actually sound like classic ones, so it's pretty strange that your doctor is reluctant to give you the diagnosis. The important thing, though, is to start healing and feeling better, so take charge of your own health. Just because he's an "expert" doesn't make him right. Good luck.

Zippyten

[poeticjul25]

Thank you, Mariann, for your reply. Yes, I should look into this Enterolab situation, because I have a feeling that may be helpful. I don't understand the egotism of some doctors, and it seems as if you have been experiencing that same exact thing. It is not a horrible thing to say to a patient that: "ok, I was wrong, and tests indicate that you do have celiac disease", if even a small amount of the IgA/IgG is found. I do feel better living life gluten-free, but still do have some of the other symptoms, so maybe slight traces of gluten are creeping into my diet without my knowledge. Anyway, thank you very much for taking the time to reply to me, and I wish you a lot of luck and health!

-Julie in Ma.

[gf4life]

Have you considered that you may also have another food intolerance (like lactose intolerance or casein intolerance, which are very common in gluten intolerance)? I am also casein intolerance and I get a very similar reaction to gluten. Infact my reaction to gluten is not as bad, bloating and gas-wise, since I have been dairy-free since November. Of course the other symptoms were awful when I did the gluten challenge from Nov.-January for the biopsy, but the gastro-symptoms were much better off dairy.

Just a thought. Enterolab tests for sensitivity to milk, eggs, and yeast, too.

God bless,

Mariann

[poeticjul25]

Mariann, I have thought that I possibly might have another food allergy, and it is interesting that you brought that up. Every morning, when I have milk in my cereal, I experience diarrhea, but then, that is the same with lactaid milk, and soymilk, so maybe I am just milk intolerant period..hehe, who knows. I don't think I am allergic to casein though, but I did discuss the possibility of the Enterolab with my mom, as she has been doing a lot to help me, and we both thought it was a great idea to look into.

Zippyten, thank you for your reply as well. I appreciate all the time you took in your response, and yes, it is frustrating that so called "experts" in gastroenterology/celiac disease keep on tossing me around in the game of "what-ifs"...I am sure you can very well relate to that. This doctor I went to is actually from Ireland and I have heard that the disease is quite prevalent there, which is why I am surprised that he made such a clear separation between celiac disease and other autoimmune symptoms...it just boggles the mind how an expert can just overlook the obvious. I suppose that he thinks it is rare that I can even have celiac disease, since it is thought of as almost unheard of in the United States, but that is where he is misinformed, from what I have read. I wish you luck in your biopsy, and hope and pray that you do not have any peptic ulcers in your system. Maybe you would test negative on one biopsy if you have not ingested gluten for awhile, being on the gluten free diet for a significant amount of time--the doctors tend to overlook that simple fact, but nonetheless, it's true. Anyway, I hope that you can feel better soon! :-)

-Julie

[zippyten]

Thanks, Julie. I will be very relieved when this endoscopy is over. I just want to know whatever I need to know, and move on. If you haven't already seen it, there's a really interesting article on this website written by Dr. Kenneth Fine, who's a gastroenterologist and a realexpert on celiac. If you go to the home page of celiac.com and look on the right sidebar, the article is listed as "Early Diagnosis of Gluten Sensitivity: Before the Villi are Gone." It's a little dense, but full of such great information that I printed it out so I could better digest it (ha ha).

Anyway, I wish some doctors would get off their high horses, when they must know how many diseases and conditions the medical profession as a whole has either mistreated, misdiagnosed, or misunderstood over the years. Don't forget, they used to treat fevers with blood-sucking leeches and thought it made perfect sense.

My last gastro doctor before my current one (who seems to be on the ball) told me that if my colonoscopy results came back negative, he didn't expect my bloodwork to show anything wrong because he expected all my symptoms were "just stress." It may not be too nice a thought, but sometimes I wish that all the doctors who told me I was simply under stress could experience my symptoms for a month and then see how quick they'd tell themselves they 'need to relax more because they're just stressed out." Frankly, there's an element of prejudice that some male doctors have against female patients. And some female doctors have it too! (Inside my evil head I call it the "Relax, dear, you worry too much" doctor syndrome.) It'd be an interesting study to see if men with celiac were diagnosed more quickly than women with celiac...

Keep us posted & good luck.

Ellen (Zippyten)

[ms-sillyak-screwed]

Hey all--I just went to a gastroenterologist in Boston, Ma., and he is supposedly a celiac disease specialist. Well, let's just say that my experience was not at all positive, and I am frustrated to high heaven with all of these doctors who assume they know everything.

Who did you go to?

[francelajoie]

Was he just a random doctor? I'm thinking of going to Boston also but at the Celiac research center. Here's the website. I've heard good things about the doctors there.

Open Original Shared Link

[ms-sillyak-screwed]

Was he just a random doctor? I'm thinking of going to Boston also but at the Celiac research center. Here's the website. I've heard good things about the doctors there.

Open Original Shared Link

francelajoie -- That is where I'm going. I am flying up from Florida the summer to see "THE MAN" there.

I must say just my experience on the phone with them was very professional, it wasn't like I'm treatewd and disrespected here in Florida.

----

I stll wonder who poeticjul25 went to?

[lifeasart]

Who did you go to?

I live in Boston and have been going to a specialist at the Celiac center. I give them a hearty thumbs up. Finally, after all these years of weird symptoms, I've been diagnosed. They know their stuff, and I found the doctors and nurses to be very nice and helpful.

[ms-sillyak-screwed]

-

[powderprincess]

Sorry you had a bummer of an experience, poeticjul25!

I'll throw out who I saw since I am local to you. She is not from the Celiac Center, but she seems nice knows about celiac. She did not make me feel bad about trying to get a diagnosis! An RN at her office named Heidi Peters was awesome. She is who I saw inititally after my blood test. She took time to explain about the disease and noticed that an on going rash I have is connected to celiac.

Dr. Taitelbaum is the one who did the endoscopy so I did not remember hanging out with her all that much. I see her tomorrow as a follow up. She did call earlier than expected after the endoscopy to make sure I went on the diet. So far so good with her I guess, I'll know more tomorrow.

Taitelbaum, Greta, MD Gastroenterology

475 Franklin St Ste 110 Framingham, MA 01702

(508) 620-9200

[ms-sillyak-screwed]

- Be Well!

[jesscarmel]

Hi

I also go to beth israel and that is where i got diagnosed. i saw dr kalmowitz who was awesome but hes leaving so im seeing dr leffler who works with cirian kelly. im meeting them in a few weeks for my appt. so far ive really liked beth israel. tommorow im getting my iron iv there and even the hematoligst there knew alot about celiac (his daugher has it)

Jess

[ms-sillyak-screwed]

[ebrbetty]

I met with my new gasto yesterday, she works in needham and is affiliated with BI in boston and needham when I told her my idiot gastro in milford said "diarrhea is the only real symptom of celiac disease' she said hes old school and most Drs don't know enough

[andyllmj]

Hi to all and yes, as you may guess I am new so if I am doing this all wrong please let me know.

First of all I realise it is early morning for you - I am in the UK near Manchester. I decided to join and hopefully chat to some of you in time.

I am male 48 years old and I have been diagnosed Coeliac (sorry UK spelling) for around 10 years or so now and for the past 4 -5 years things have been really rough at times. I read with intesrest poeticjul25's comments, I agree it is hard to 'be taken seriously' at times and I think there is not enough recognition of the debilitating symptoms that can arise both from undiagnosed celiac disease and diagnosis after the body has 'taken a pounding' and diagnosis has been late.

I am lucky, I have a good doctor who is very understanding but I have met some in connection with other problems who have been dismisive and not really wanted to listen.

I dont want to ramble on so I will just be brief; I have to follow a strict gluten-free/WF diet and I am very sensitive to any wheat, rye, barley, oats - even malt or certain fats or rich foods; my health at present is up and down with no clear or happy 'medium or normal'. My own doctor feels I have ME type symptoms and I have to agree with this, I feel I have damaged or over sensitive nerves and have terrific back, leg and neck/head pains; I am certain that a lot of this pain is due to damage caused by undiagnosed celiac disease. I have fatigue, bone pain, nausea, cravings, IBS and so on........ all the common complaints related to celiac disease and It is very hard to explain to people that you feel really awful when you may look OK, and frustrating too.

If this strikes a bell with anyone - I am sure it will then I hope it is of comfort; I am glad to have joined this forum and hope to hear from some of you soon.

Regards to all

Andy

Hi to all and yes, as you may guess I am new so if I am doing this all wrong please let me know.

First of all I realise it is early afternoon (what was I thinking of) for you - I am in the UK near Manchester. I decided to join and hopefully chat to some of you in time.

I am male 48 years old and I have been diagnosed Coeliac (sorry UK spelling) for around 10 years or so now and for the past 4 -5 years things have been really rough at times. I read with intesrest poeticjul25's comments, I agree it is hard to 'be taken seriously' at times and I think there is not enough recognition of the debilitating symptoms that can arise both from undiagnosed celiac disease and diagnosis after the body has 'taken a pounding' and diagnosis has been late.

I am lucky, I have a good doctor who is very understanding but I have met some in connection with other problems who have been dismisive and not really wanted to listen.

I dont want to ramble on so I will just be brief; I have to follow a strict gluten-free/WF diet and I am very sensitive to any wheat, rye, barley, oats - even malt or certain fats or rich foods; my health at present is up and down with no clear or happy 'medium or normal'. My own doctor feels I have ME type symptoms and I have to agree with this, I feel I have damaged or over sensitive nerves and have terrific back, leg and neck/head pains; I am certain that a lot of this pain is due to damage caused by undiagnosed celiac disease. I have fatigue, bone pain, nausea, cravings, IBS and so on........ all the common complaints related to celiac disease and It is very hard to explain to people that you feel really awful when you may look OK, and frustrating too.

If this strikes a bell with anyone - I am sure it will then I hope it is of comfort; I am glad to have joined this forum and hope to hear from some of you soon.

Regards to all

Andy

[ebrbetty]

hi andy, welcome to the group. we seem to have the same symptoms, very frustrating hopefully we will all feel better in the near future..for now all we can do is support each other, I think you will find that here, its a great group of ppl.

take care..Betty

[andyllmj]

hi andy, welcome to the group. we seem to have the same symptoms, very frustrating hopefully we will all feel better in the near future..for now all we can do is support each other, I think you will find that here, its a great group of ppl.

take care..Betty

Hi Betty,

many thanks for that. i know I messed up with my first message - left it twice I think; but who cares. I am really glad to hear from you, there is so much involved in celiac disease that you do need support.

Thanks again

Andy