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poeticjul25

Yet Another Winning Doctor..

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Hi everyone,

It's me again.. how are you all doing? I just came back from my visit with my primary care doctor, because that is what the specialist in celiac disease in Boston told me to do, and yeah, he was a lot of help...not really. He said to me: "Are you sure you're not depressed?" This is the second time I have heard that at that doctor's office, and it's like no, I am not depressed..just pissed off and frustrated that nothing can be done for my celiac disease symptoms, such as the joint pain, nausea, stomach problems, bloating, fatigue and itching. He ordered a battery of blood tests, and since I did not know I was going to have blood drawn today, I was not prepared, fluid-wise. Needless to say, my arm is in a lot of pain right now, and the nurse did not get the blood..I almost fainted then and got nauseous. Anyway, it just goes to show you that primary care doctors do not know a thing about celiac disease or what to do--you come to them asking for help--about where to go from a certain point, and all they can do is throw up their hands and say "I don't know" or suggest an emotional psychological problem. Yeah, ok--I didn't just imagine that I lost 20 lbs. in a month, and all these other symptoms. The first thing I did when I came home was just cry and yell out of sheer frustration--this bouncing around from doctor to doctor and the patronizing attitudes of: "it's ok, dear.. you're probably just stressed" is really getting to me. I'd like to go to a good doctor for once who can actually help me--this is absolutely ridiculous. I heard about the drug Altovis, or something along that line, for the lack of energy experienced--have any of you heard of it, or have had experiences with energy depletion and fatigue? I just had to vent--I'm not a happy patient right now, and these "all knowing" doctors can just shut their mouths, because if I hear one more time that I am depressed, I am going to scream! :angry: Have any of you been given that line before when you've been trying to tell primary care doctors your problems? It's almost as if I shouldn't have bothered with him--I had a feeling that he wouldn't be able to help me. Anyway, I hope all of you are feeling well, and I am sorry about this rant--I just had to get it off my chest..take care! :-)

--Julie in Ma.

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Guest jhmom

Hi Julie, I am so sorry you are having a bad day! :(

You are right doctors do not know much about this disease and are quick to dismiss it if it doesn't jump up and bite them in the butt! Then they look at us like we are crazy when we mention it to them :angry:

Yes I have heard the same line, except I took a list of symptoms to show my GI doc and he looked at them and said well all of these can be symptoms of depression! I was quick to tell him that I could not tell a difference in my well-being when I was on Zoloft (which he put me on) and when I stopped a couple months ago, all he said to that was OK.

I do not know what your financial situation is like but if you are tired of going to doctor after doctor only to be told the same thing their is a solution through Enterolab stool panel test. This test is more sensitive than blood and more accurate! This is the way my daughter and I were diagnosed along with many others on this site!

Of course you could also go on a gluten-free diet for a couple of months to see if your health improves if so you know what the problem is, if not you can continue to search for it!

I know you are sick and tired of being sick and tired, I've been there I know how you feel and I do hope you get some answers soon! Hang in there, it will get better! :)

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Stacie,

Thank you so much for your time and support in your response. You and every one else on this board are truly god-sends--you have been more help to me than any of these doctors, and make me feel a lot better in the knowledge that I am not alone. I assume you have gone through the exact same thing as I have gone through, judging from your response. If only some of these doctors could go on to this site and check out all the posts, and then they will be quick to retract the charge of being depressed. I know, as I am sure you know, that this is a lot more complicated and hard to pin-point, and I can't believe that you were put on Zoloft for your celiac disease symptoms. I was put on Paxil in August, because my primary care doctor seemed to think that my frustrations were rooted in depression.

I have heard that the base-line Enterolab is about $99.00, and I would be more than happy to dish that amount of money out to pay for that, and see what that could do...at this point, I'd be willing to try anything that would be of slight help, if not more. I think that that would put my mind at ease a great deal. I have been on a gluten free diet now for about 8 months now, and I am seeing improvements, but do have occasional slip ups, because of the lack of food labeling. I am 23, but feel as if I am a little 99-year-old lady with all of these issues..lol. I'm currently looking into a naturopathic doctor now who specializes in celiac disease and also a nutritionist, and my mom and dad have been very supportive and understanding throughout this whole thing, as you and everyone else on this board has been. I am sorry about my rant before--I just got so angry, and felt that I had no where else to turn, and posting on this board really seems to help me, as i said before.

With that said, I hope that you feel better too, and continue to enjoy good health--thanks again for your response, and I hope that you are doing well! :)

--Julie in Ma.

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Depending on your other symptoms, you may try convincing your doctor to test your testosterone levels. Many of the symptoms overlap, and just because you're young, it doesn't mean you can't have low levels. I think celiac may contribute to it - if it's affecting your thyroid, and if you've been on the birth control pill, that could lower your levels as well. (It may be hard to convince them to test you.)

Just a thought - try looking up the symptoms.

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Julie,

You are not alone. I responded to one of your posts in another category, in which I mentioned that I think that many (not all) male doctors do seem to have an attitude toward female patients which can be summed up as the "you must be under stress/depressed" syndrome. It also drives me crazy because they get to that diagnosis almost immediately! Before they've even attempted to eliminate all the obvious, serious, real-disease possibilities. I really doubt they do this as much with men, but with women, no matter how serious your symptoms may sound, they automatically assume you are either exaggerating, bringing it on yourself, or so unable to cope with the realities of your own life that your body is falling apart. (Or, maybe you're just imagining all of it.) I'm sorry to sound sexist, especially to all the men who are reading this (and are completely innocent!), but why is it that when a doctor like this sees a male patient, he starts from a place of "this man is sick and it's up to me to figure out why" and when he sees a female patient, he starts from a place of "this woman's emotions are making her sick and there's really nothing wrong with her that some antidepressants wouldn't cure."

I am much older than you and I have encountered this from doctors my entire adult life -- and because I have suffered various symptoms my whole adult life, I have been to many. But in my 30s, I more or less gave up until I recently became pretty scared I had colon cancer (my father died of it). My primary care physician (who happens to be a gi doctor) said that if my colonoscopy proved negative, he didn't think he'd find anything wrong in my bloodwork because, and this is a direct quote: "I expect it's all just stress."

Fortunately, I started going to the doctor who did my colonoscopy and he thought of celiac and subsequently diagnosed me. So there are still doctors out there who will not dismiss women as big buckets of stress-induced symptoms.

I don't know if there's a moral here (except for don't give up), but I wanted you to know that your perceptions are accurate and that you have a right to be angry and frustrated. It's good your family is supporting you because that will help get you through. But the medical establishment certainly has a long way to go. Keep us posted.

Ellen

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While going through the diagnosis process. I had a doctor hand me a sample packet of prozac and tell me I was depressed. I looked at him and said, "I may be depressed, but the only reason I would be is because you are too stupid to figure out what is actually wrong with me." And I walked out of his office and haven't been back, however when I got my diagnosis, I did mail him a packet of information on Celiac so he could brush up on how to diagnose patients. :D

Only you can be an advocate for your own health. You can't always trust doctors to have all the answers.

-Jessica :rolleyes:

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Guest jhmom

Hi Julie,

My doctor put me on Zoloft after he "tried" to diagnose me with IBS; I took it for a few months but could not tell a difference. I went to several docs for over a year only to be told, "drink some fiber", "you have IBS", "yes I agree you have a severe case of IBS" but lets do a boat load of tests "just to make sure". By last June I had enough! After having a CT scan and had to drink that barium (crap) and then while in the middle of the test had a sudden urge to go to the bathroom and had to lay there until they were done, I made up my mind I would get to the bottom of my health problems without going through ANY more tests!!!

Shortly after that I ordered the tests from Enterolab. I didn't have a lot of money to spend so I ordered the "gluten sensitivity" test; I think it cost me around $120.00 after the overnight fee they add to it. They ship it to you regular mail and you send it back Via Overnight (Airborne Express for me).

"I may be depressed, but the only reason I would be is because you are too stupid to figure out what is actually wrong with me."

Good for you Jessica!!!! I think more doctors would take notice if WE (the patients) stood up for ourselves and no longer tolerated less than average healthcare!!!! We pay them well and they should take to time to LISTEN to us and our concerns! If they do not then we have the option of firing them!!!

Take care :rolleyes:

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Ellen,

I had thought about what you had said before about the whole male doctor/female patient situation, and how a male doctor is more apt to say to a female patient that she is depressed, rather than attempting to dig deeper than that and find the root of the problem. I think you are right--and this other female doctor at that office (and yes, she was kind of mannish and very cold and clinical) seemed to think my problems were psychological, and I told her that it is human to feel emotion, and I'd rather express my frustrations with all of these doctors that cannot help me than just hold it in and say that I am satisfied with a ridiculous fake grin on my face. Yes, I think to a point, women are expected to swallow their complaints and learn how to deal with the "stress". I flat out told this doctor that I am not giving up and that I am going to get to the bottom of this and will not be brushed aside. I agree with you that you have to be an advocate for your own health, and as a shy person, this has really catapulted me to speaking up for myself..lol. I am going to a naturopathic chiropractor tomorrow at 5:00, who is actually my cousin, and I'd prefer going to him, because I trust him and maybe he'd be able to help me find a naturopathic doctor who can steer me in the right direction, with none of this "it's all psychological" crap. It is very scary what you went through, and I can imagine your fear when you thought that what you were going through could have been related to colon cancer, as your father had it--all sorts of thoughts must have been flashing through your mind then, but I am glad that through the colonoscopy, this doctor that you went to could finally help you and relieve your worries about colon cancer, even if he did diagnose you with celiac disease. I know that both conditions are horrible, but at least you can more or less control your celiac disease symptoms with this gluten free diet--how are you feeling, by the way?

Jhmom, did you ever feel like a lab rat when you were put through that whole battery of tests? It's almost as if you're the human lab experiment, because celiac disease is "so rare", or at least that's what they say, and would like you to believe. I am glad though that you stopped going down that route--it's almost a dead end, and you know your own body and what it feels on a day-to-day basis. The Enterolab results seem to solidify a lot of questions as to one's symptoms. IBS seems to be a popular misdiagnosis and it seems that celiac disease masquerades as that quite often, but then, what I want to tell these doctors is that "would I be feeling this bad if I ate all foods, or just gluten-containing foods?" Doctors don't seem to see that fine line between IBS and celiac disease, it seems.

Jessica, I am proud of you that you told your doctor off--it seems as if that was a long time coming, and I wish I could have said the same thing to mine today. I smiled when I saw what you had said.. :D Maybe your words will shock some sense into this doctor, or at least we can hope.

Tarnalberry, I have never thought of the possibility of the testosterone levels before, but it does make some sense--I am on yasmin-28, the birth control pill, and that could affect the testosterone levels in my blood, and I did have my thyroid checked, but it came out negative. Thanks for giving me another avenue to possibly check out soon. Is the testosterone issue something that you experienced in your condition? i'd be interested to know.

Ok, well, it is off to bed I go for the night--feeling very sleepy :rolleyes: Take care everyone, and good luck to you all, especially on the night of luck--St. Patrick's Day..hehe..and by the way, Happy St. Patrick's Day to everyone!

--Julie in Ma.

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Yep, I have low testosterone. I don't know if it was the celiac, the pill, or other factors. But I take a supplement and have noticed a difference.

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Hi Tiffany,

If you don't mind telling me, what supplement are you taking to help? I have heard that B-12, B-6, calcium supplements and keffir have proven to be very beneficial, and I don't mind going down the vitamin supplement path--it seems necessary now, to ward of the still-existing symptoms, despite being on a gluten-free diet now for about 8 months. I do feel a lot better, but still have the joint pain, dizziness and even the stomach upset from time to time. Thank you--take care! :)

--Julie in Ma.

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Oh, sorry about the confusion (I've been sick and my brain no function well :-) ).

I meant that I'm taking testosterone to get my levels back up to normal. It's a compounded, sublingual form because the compounded cream I tried just wasn't very effective for me. (My test results started at <0.2 (undetectable) and are now at 0.7 - smack in the middle of the normal range.)

As for regular dietary supplements... I'm not doing the best combination at the moment, but what I take is a multivitamin, calcium (with extra D and magnesium) and a B complex.

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Julie,

Believe it or not I had no less than 4 (four!!!) different doctors, male and female :angry: tell me they thought I needed Prozac or some other depression med and that this was all in my head. Needless to say they were dismissed. Regardless of whether I needed something for depression or not they chose not to listen to my concerns. Idiots! Keep on moving forward and trust your instincts.

Andrea

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Hi all, I am pretty new here, posted a few times but this one struck a nerve... I have been on Prozac, Zoloft, Amyltriptiline (sp?) and Paxil. I have fought with doctors my whole life and they all, even the women patted me on the head and told me I was stressed, depressed or whatever. Most of the pills made me want to eat dirt... or drove me crazy. Oh yes Welbutrin as well, that one made me want to shoot myself. I stayed curled in the fetal postition for days on the particular one.

I have had just about every blood test in the world, except for celiac/gluten intolerant. Other than being slightly anemic, which I was told I was because I was so thin and had such heavy cycles that was normal to take iron and eat more meat. I am a meat eater, not lacking there. We raise cattle for gods sake.

If I had dollar from every doctor who has dismissed my pain, said I was depressed or stressed. Well it would buy me quite a few gluten free foods.

You are right. When you hurt you are depressed when there does not seem to be a reason or relief. And Julie you sound like me. I am 37 and felt 100. My joints hurt, my stomach hurt, food killed me, beer killed me. I would actually drink some beer to kill the pain!! LOL guess what after 3 I was in agony. Its a buring pit of hell. I thought I had bone cancer or something.

Doggedly I went to some of the best and most noted clinics, who will remain nameless but I am Minnesota native and lived very close to Rochester ;) I have been to "U of M""U of I," rheumotologist, MD, even a therapist. None of them ever helped me. One suggested cortison shots into the joints which were causing the most pain. No one ever really tried to help me. I got the opinion that fainting couches should still be very much in fashion for us hysterical girls.

Finally disgusted and knowing I would not, could not live this way anymore, I stumbled, literally stumbled on this gluten thing... Its a long and convoluted story but I immediately took all gluten out of my diet.

Within 2 days my worse symptoms were gone. Its been nearly a month now and I am a new person. Nothing hurts, I feel 20 again. I eat and the food gives me energy instead of sucking the life force out, I run, I jump, I am intimate with my husband, I feel absolutely great. I have no symptoms except for some bumps, but those too are going away.

I am not advocating not going to doctors. Just that in my case, I was sick of them and did not trust them and I wanted to feel better NOW. I will not go back on gluten to be tested. Nothing could induce me to eat it again.

My daughter was born with PKU and it was there I developed a huge mistrust for people who were not specialists, any doc, no matter what if he/she was not a PKU specialist? NO CLUE. I could teach them many things and have. Gotten into arguments with nurses, you name it. Why should Celiac be any different...

sigh :angry:

And like you Julie, if I was depressed it was because I was in constant, chronic pain and discomfort. Each episode got worse until the last one which lasted over a year and in which I was using a cane in some cases. the last doc said I had osteo arthritis in my knees... guess what? My knees? they are fine now, no problems at all!! I avoided all life because I hurt. I could not even consider going to the amusement park with my kids, all that walking? No way. I am an avid horse rider, it had been a year since I had climbed on my horse... I think depression goes hand in hand with any kind of pain and its hard to live your life in constant frustation on top of that. But if you do indeed suffer from celiac disease or gluten intolerance, then the depression is secondary. And if you find someone to help you, yours too will probably dissappear.

I just thinks its a darn shame we have to put up with it. Its a shame that we have to kick and yell to be taken seriously. And even then, I was pretty forceful and sometimes combatative towards the end, they just sort of roll their eyes...

In many cases we are nation of self induced illnesses. We eat too much garbage so we get diabetes or too heavy, then the heart goes etc etc. We smoke and get cancer etc. The doctors only treat diseases that are helped with drugs. You cannot help this with drugs, so therefore it gets put on the back shelf. It is not self induced either other than when you eat gluten because of ignorance. In fact many of them say "all you have to do is avoid gluten" just like they said all you have to with your PKU kid is a diet. NEITHER OF THESE is that simple! avoiding gluten is darn hard.

As for me, I dont need a doctor here. Again I am not saying that is the correct or right choice for anyone else. I know that I feel better than I have since I was very small, and in many cases, better than that. I get tears of joy when I can mow my whole lawn in one sitting, when I can pick my tomatoes, when I can take my kids to the fair... Can is the operative word here. That to me, is worth more than any doctors tests. Whatever it is I have, gluten is nasty poison to me.

I wish you luck and only good things from now on!

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Guest Cortex

I am an internist and screen for this the disease. In the past year I have had 100 cases. Anyone can make an appointment and get a blood test.

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Guest ~wAvE WeT sAnD~

Cortex--

I am relieved to see an Internist who's knowledgeable about the disease. The two Internists I saw were clueless--I had EIGHT pregnancy tests in a month--when i wasn't sexually active at all, diabetes screenings, the list goes on. I had to educate my family doctor and the nurses as well.

Thanks for helping Celiacs Beat the Wheat,

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Cortex....

By now you must realize that tooooo many people that suffer from celiac have found relief by self diagnosis. Everyone recognizes that this can be dangerous. However, I personally spent big bucks on lab tests and "specialists", and none of them ever came close to a diagnosis of celiac. You could do all of us a great favor, since most doctors don't believe patients, if you would present papers to the members of your profession regarding symptoms and treatment by going on a gluten-free diet. Thank you for your consideration.

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I think the biggest thing is getting out the word to doctors that the gluten-free diet does NOT have to be "nearly impossible" to follow. I know doctors are often concerned about patient non-compliance on treatment, and so they may figure the rate of non-compliance will be so high, and even trying will make the patient so miserable, that it's not even worth suggesting. If they realized, as a group, that it's challenging, but very doable, they might be less hesitant to suggest it.

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Brand new here, just had my family doctor confirm thie morning that I have Celiac. I guess which is a good thing, but he does not know a thing about it or how to treat it. He just told me to get on the web and see if I could figure out what to do. I can see there is a special diet but does anyone take meds to help? I am not sure if I should go see another doctor and what kind I should see or what to do next. All I got today from my doctor is this is what the blood work and other test show and good luck. So what the heck am I supposed to do next?

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This seemed like a good place to vent. I am absolutely furious and disgusted. My mom went to the doctor to have her annual check up and request the celiac blood test. She has the classic textbook symptoms of Celiac, but has been saddled with the good old IBS diagnosis. Because I have done so well gluten free, I encouraged her to be tested. Her doctor flat out refused to have the blood test done. She actually told my mom that she would die from a lot of other things before celiac disease would do anything to her. Of course in the same visit she also asked her if she was anorexic. My poor mom was so embarrassed and upset. She said she will not be tested now because she does not want to go through that again. She is going to try being gluten free for a couple of months and see what happens. It should not be this way!!!! :angry:

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I've also been going around in circles with doctors. I kept losing weight,(went down to 89 lbs) had terrible daily migraines, diahrea, muscle pain, joint pain and at one point I was so sick that I wound up in the hospital! I had a rapid heart rate, thryoid was fast and all the above syptoms. I was told it was a flu. They gave me IV fluids and asked if I felt better I said no but they sent me home anyway. Not knowing that my diet was making me so sick I continued with what I was eating and just got worse. I told the doctors I felt better when I didn't eat...but nothing got through to them. I was asked if I had an eating

disorder..hhhmmmmmmmmm...like what?? They thought because I weigh so little I must be anorexic. The neurologist I went to because of horrific migraines sent me to a psychiatrist to evaluate for psychosomatic illness. He said that it was impossible for a young, attractive lady to have so many complaints! Can you believe that? Of course I said something to him right then and there and he just said...well you've got 5 things listed on your medical history here. ...how could it be that you have 5 bodily functions breaking down at one time! I never went back there....but I did go to a shrink because I knew that stress was making me worse. The shrink said you have to get to the bottom of what is going on with you....You are not psychosomatic..and with that he sent his report to the neurologist!

Soon after they found an immuoglobulin deficiency and I am being treated monthly with IGG replacment. At least I am not getting as sick as before. I complained to my allerigist/immunoloigst about all the GI problems and still feeling like crap. He said to go to an infectious disease specialist. Anyway, the point of that story is that right under his nose were blood results from my previous internist for Gliadin AB (IgG)! He's an allergist...do you think he would have noticed something was wrong and commented on it? Especially since I had been complaining of flu like sypmtoms, stomach pain, bloating and diahrea all the time. I told him I felt like I kept getting viruses....hhhmmmmmm a little creative thinking here please!! afterall ...you ARE a doctor!

I know I am just going on an on...but I am so disappointed in the medical profession! Instead of helping me...they just made me worse by needless surgeries and nonsense treatments! I guess I was so stupid....(all this before I got hip to computers) Thank god for the Internet! Enough said.

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Hi Mel,

this is so true. THANK GOD (and the american army :lol: ) FOR THE INTERNET. I know some relatives who are always complaining about the internet and computers and blablabla. What is wrong with them? It can help so many people. It also helped me better to find out what it was with me. The internet and this helpful message board here. Thanks guys!!! If this message board wouldn't exist I probably already would be dead (I was already thinking about it) before i found out it's the gluten that bothers me.

Greetings, Stef

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Hi All,

I'm sorry that so many people have had bad experiences with doctors. I've been lucky with my physicans so far. Except that it took my first doctor 2.5-3 years to figure out that I had celiac disease, I thought he was nuts when he first mentioned testing me for it. Glad he did though.

I wonder if it is possible for people who are frustrated with their PCP to move to a new physican within their insurance. All of the insurance plans that I've had have allowed me to chose a PCP from a list of many doctors. And they allowed for changing PCPs as well. When I've moved since diagnosis I've researched the doctors that I had to chose from and asked them questions before I selected a PCP. After my previous move the first PCP I picked turned out to only have the most basic outdated knowledge about celiac disease and a terrible attitude (all in the first visit). I made a complaint about him and switched to a new PCP who was INCREDIBLE--constantly researching celiac disease to stay up to date.

We have a lot of power as patients.

Best Wishes!

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Knowledge is power!! Now when I get a dr. that has an attitide or dismisses what i have to say I just tell him off in the office. I am tired of taking their nonsense and speak my peace right then and there. Then of course if I don't feel they are competent or sympathetic I just don't go back. Sometimes I get so upset with their behavior that I write a letter. It's a great way of releasing anger and you get your point across....espcecially if you have no intention of going back.

It's a shame it has come to this but the bottom line is that we need to get well at whatever cost......no matter who's ego or feelings get bruised.

There were many times that I thought I wouldn't make it....I actually wanted to die....that's how sick I was. I'm taking every stop possible to ensure I won't think that way again............in spite of the downs that come our way.

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Hello Everyone.

New to the forum and wanted to share a positive experience in hopes it provides hope and support for others, expecially those just embarking on this journey of being gluten-free.

I'd have to say I'm one of the lucky individuals who's time with the disease and correct diagnosis are well under the average I've read about and seen referenced in studies.

I presented with the skin rash symptoms (DH as I've seen it abbreviated) and visited my primary Phys on two seperate occasions for treatment of what I thought was either poison of some type or really dry skin. This went on for about a year and half, mostly due to my resistance of going to the Dr. and navigating the healthcare system. However, after the second failed attempt to treat the condition he strongly recommended I see a dermatologist. Again, I procrastinated because I didn't like dealing with referrals and such, but finally had to do something since the rash was severe enough to be keeping me up at night (only now do I realize the worst condistions often followed after having pasta for dinner.. that hindsight being 20/20 thing).

Upon seeing the dermatologist and showing him the rash and that it was specific to locations of the body (knees, elbows, etc) he commented that he did not often see these symptoms but had a strong idea what it was. He came back into the office with a medical book, showed me some pictures that matched my symptoms. He took a biopsy and sent it out. He also explained that dermatitis herpetiformis is an indicator (although not the most common one) of Celiac disease. He explained what that was as best he could then said I should see a GI specialist.

With a lot of help from my wife I began cutting gluten from the diet and made an appt with a GI specialist. Even before that appt, my symptoms began to clear, but seeing the GI was informative to some degree and the additional blood work was conformation I wanted.

It certainly has not been easy, but I'm glad I happened to have two specialist who knew what they were looking at. As it was posted, knowledge is power, and more knowledge is entering the public domain every day.

Just recently one of the major news networks in Philadelphia did a health peice on the nightly news about a well know local businessman/celebrity who, after many years of odd symptoms, was diagnosed with Celiac disease. The peice was well done in my opinion and very accurately highlighted the fact that celiac disease can often be misdiagnosed. Hopefully this kind of exposure will not only help possible suffers, but the medical community as well.

Thanks to all who have been posting here and sharing their knowledge - it's been great for people like me who are new to celiac disease.

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Cheryllk tried to post this, but used the report button:

I can't take the pain anymore of hearing about all the doctors that have their heads up their tails and don't give a hoot about their patients.  I just got the phone call today and  Dr.JERK could not even call my cell phone he had to leave the message to tell me that a gene and stool test were not credible and he couldn't except it.  But I bet he would except an endoscopy for a thousand bucks and sedate my child with out a problem.    If it was in my divorce decree I would move to Europe, because their doctors have enough intelligence to admit that medical testing evolves, and doctors are not GODS.  (even though they think they are)  When I thought that I was all alone in my fight to have my four year old diagnosed and get her gluten-free diet fully underway, I read all the messages and I don't know if I am more sad or mad at what is being done to patients.  There has got to be some way to change this and whether it is fire the idiot doctors one by one or more awareness of the disease, I want to do something.  I am glad my child's damage is not severe. but time (on gluten) is not her friend.  I can only imagine the poor children who suffer needlessly because of misdiagnosis.  Am I the only one who wants to rent a billboard and let everyone know about the disease and how misdiagnosed it is?  Anyone have any suggestions on what I can do?  Sorry, but I am angry.

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    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023