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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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DLayman

Great Line For The Doctor..

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I posted for help on another board I am on to get the doctor to listen and do the blood panel.. I really needed the words to put it politely.. consisely and get results.. well someone sent this line....

"I understand the direction you are going but as a mother I feel that this (insert name of test, problem, procedure, etc.) will give me peace of mind. Is there a medical reason not to perform this test prior to continuing? (they say yes or no...almost always no). Great....when can we schedule it for?"

I think it will get results.. I will be trying it out at the next doctor visit..

Denise

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As a physician, I can sadly tell you that you may still have trouble...alot depends on what type of insurance you have! For patients with HMO type insurance, doctors get penalized for ordering expensive tests - we have to show justification for doing so...and in many cases, it is hard to do. Some doctors are good at writing letters with a good "spin" to make the case, some doctors don't want to be bothered. Some have an ego problem and don't want patients telling them what to order...

Offer to pay out of pocket for the test if you can't get the doc to order the test (check the cost first - it may be absurdly overpriced.)

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I have another thought on how to get your doctor to listen to your concerns re: celiac disease.

Next time you have an appt with the doctor, bring copies of doctor-written articles on celiac disease from respected journals. Stuff written by non professionals has very little influence on most docs. Here is a link to a good article:

Celiac Disease review article This article is a little old, but it is still very good.

another review article appeared in The New England Journal of Medicine on Jan.17, 2002. Volume 346, pp.180-188. You can't get to it online without paying a fee, but you can probably get it at your library.

Personally hand the articles to the doctor, ask him/her to give you a call when he/she has read them to discuss IF he/she thinks that you may have reason enough to get tested for celiac disease(or schedule another appt to discuss in a few weeks). Don't mail the articles or leave them with the nurse or receptionist... they will likely never be seen again.

Hope this helps!

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Well I would hope I would not have to hand the 'premier' ped. gi doc of the children's hospital information about celiac.. he has already done an endoscopy which came out negative but I have found more times than not that young children have this happen. Also he had been on a pretty much gluten free diet for the better part of 4 months .. the last two months he was gluten-free except for a half a peice of bread a day..

So if insurance was going to take issue with anything I would hope they would have taken issue with the endoscopy..

that all said you think I have a chance?

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If he knows so much about celiac disease, you'd think he'd know not to do the biopsy while the child is on a gluten-free diet! (remind him of this at your next visit-not that he should've known better, but that perhaps the results were inaccurate...)

What are you asking for him to do next? another biopsy? or the blood work? neither will work well unless you put your child back on full gluten diet for at least a couple of months.

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He was taking in at minimum a half a slice of bread a day two months prior to the biopsy. It may not have been enough gluten in take.. or he may just not have damage. He is now on a regular gluten to the hilt diet.. since the tenth of the month he has not had any good bms.. all loose and yucky.. about 1 to 4 a day right now.. ooh I take that back he had one.. but that was after a 24 hour period of him really not eating anything because he has a cold..

He was on the regular diet about 3 weeks when this started up again.. it's like we are back at where we were when this started last year.

I just want him to do the blood panel and then I am starting him on a gluten-free diet again as soon as that blood is drawn..

The appt is on the 15th so he will have been on a regular diet for 7 weeks.

I still don't understand why he did the biopsy first..

clueless..

especially since I have been told that he has had to be bullied into it in the past..

We just had a fecal fat and trypsin test done as well those came back normal..

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Hi!

I'm new to this forum, so please excuse and correct any mistake in protocol. Thanks.

I finally found my celiac disease by reading "Dangerous Grains". My symptoms were not classic, but I've had all kind of GI problems all my life, and the confusion/depression kind of stuff. None of the doctors could spot it.

Anyway, after I finally got a diagnosis, I did a lot of research and kept coming up with a link, although infrequent, between celiac disease and Rheumatoid Arthritis (RA), which my husband has. He didn't think he had celiac disease because he doesn't have GI symptoms and doesn't understand that you can have celiac disease and have some very atypical symptoms, or no symptoms at all. I got him to ask his rheumatologist about it, but the rheumatologist just poo-pooed it and I got the feeling the he was giving my husband the standard "tell her not to worry her pretty little head about these complicated medical things" line, which was the attitude he had when I met him on one of my husband's visits. That was the same attitude I got from many of the other doctors when I was trying to get my own diagnosis. If I hadn't finally fought my way through all the people who didn't know what they were talking about and paid for the blood tests and biopsy myself, I still wouldn't have my own diagnosis. Getting my own diagnosis gave me a tremendous boost in self-confidence. Now I know that I can trust my own research.

I still wanted my husband to be tested. So I got all kind of articles from Reader's Digest, Woman's Day Magazine, and a bunch of GI doctors and the Celiac Foundation. I also included a handout from the Celiac Foundation called "10 things doctors may want to know" or something like that, which talks about how often celiac disease is misdiagnosed because doctors aren't trained to look for it, and circled that part. I had a whole stack of stuff. I left each article open to the page that referenced RA and circled the reference. I wanted to make it as easy as possible for him to scan and get the pertinent info in 30 seconds or less, which is about the length of time I thought the doctor would devote to looking at the stack of articles.

Then I got my husband to bring it to his doctor on his regular visit, which I think he did just to shut me up. (;>). But I didn't care why, I just wanted him to be tested. It worked, I think I embarrassed the doctor into doing it, because he gave my husband the orders and he will be tested during his next blood test. The doctor told him that he doesn't have celiac disease, but that's what kills me. He can't know that without at least screening for it in a blood test and even then, he may not be able to tell. The doctor is just convinced that he would be able to tell. I'm sure it's because my husband doesn't have the classical GI symptoms. Whatever the reason, I'm just hoping that he does have celiac disease, because I really believe that there is a connection and that the GFD will help him. Keep your fingers crossed for me. I will post on here if it turns out to be right. Thanks so much for this forum. As I've said, I'm new here and newly diagnosed, but so happy to have gotten diagnosed and on a GFD. I've been sick for so long and things are getting better every day.

Gerri

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
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