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Doubts About A Gi Doctor I Just Saw


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#1 Coolclimates

 
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Posted 21 July 2010 - 05:36 AM

I just saw a second GI in Champaign-Urbana, Illinois yesterday. She is with Christie Clinic. I don't want to name names, but if you contact me personally I will tell you who she is.
Anyhow, she looked over my results and said that I have a mild case of Celiac disease. I told her about my symptoms: fatigue, insomnia, restless leg syndrome, acid reflux, acne, easy bruising, frequent nose bleeds, sinus pressure and congestion, depression, anxiety, frequent yeast infections, some weight loss. She said she didn't think that many of these symptoms were related to Celiac at all and that they may never go away. But I have read in many sources that these can all be symptoms of Celiac.
I asked her about gluten free lipstick, soap, lotion, etc and she said that it's not an issue and not to even think about it. I also asked her if I have a potential to gain a lot of weight on this diet and she said very few people gain weight on this diet and not to worry. I also said that I heard that rice, corn and potatoes have a lot less nutrients than wheat and can be empty calories, but she said that they all have the same nutritional values. I asked if I should be eating more grains with more nutritional value (quinoa, amaranth, etc) and she said not to bother.
I also asked her if I should go dairy free for the next few months (as I haven't gotten much relief yet from the gluten-free diet I've been on for 2 1/2 months). She said I could if I wanted, but she seemed rather indifferent about it.
Needless to say, I'm a bit confused and frustrated with this appt. Is it my imagination, or does she have a lot of misinformation? I've read many books written by professionals that contradict much of what she told me.
I think I should maybe contact the Celiac center in Chicago next as they might be more informed.
Any thoughts?
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#2 ravenwoodglass

 
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Posted 21 July 2010 - 05:52 AM

I think she is misinformed about the full systemic effect of celiac disease, but she is not alone in that as far as doctors go. Since she is a GI doctor her primary interest is going to be in the GI symptoms. It seems you know more than she does at this point and I do think that giving up dairy may be helpful for you. You know you need to watch out for lipsticks etc so you don't really need her permission to do so.
You have only been on the diet for a couple of months and for some of us it takes time to heal. If you have been accidentally glutened during that time it will slow down the healing a bit.
As far as going to the celiac center you mentioned what is it that you want them to do for you? They may want you to do a challenge for a ocuple of months to do their own testing, is that something you want to do?
I guess what I am trying to say is that you have your diagnosis, as far as the celiac issue goes it can take time and being very strict to heal fully. I would be as strict as possible, eat as much unprocessed foods as you can and take some good for sure gluten free supplements. Give up dairy and soy until you have healed fully then add them back in one at a time to watch for reactions. If after a while you are still having serious issues then yes do get evaluated to make sure something else isn't going on, whether you are celiac or not does already seem to have been determined.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 StacyA

 
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Posted 21 July 2010 - 04:48 PM

Don't rely just on a doctor for information. Read the books. See a dietician. Buy some cookbooks. Cruise the internet (reputable sites.) Even someone with diabetes would seek information from sources beyond a physician - and a good physician would encourage it.

See if there's a dietician in your area with knowledge of celiac's.
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#4 Coolclimates

 
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Posted 21 July 2010 - 06:22 PM

Don't rely just on a doctor for information. Read the books. See a dietician. Buy some cookbooks. Cruise the internet (reputable sites.) Even someone with diabetes would seek information from sources beyond a physician - and a good physician would encourage it.

See if there's a dietician in your area with knowledge of celiac's.


Unfortunately, the dieticians in my town are pretty useless. That doctor even told me so. The other GI I saw earlier (who did the biopsy) couldn't recommend anyone here either. I did see one dietician, but she was really not that informed about the gluten-free diet and couldn't answer many of my questions.

Believe me, I've done my research. I've read nearly a dozen of the newest books about celiac disease and have also looked at online info (like here). I've also read through many cookbooks and have bought some. I think the Chicago Celiac center may be what I need to look to next.

Basically I am unsure whether I should eliminate dairy products for the next few months. I don't have any allergies to dairy, but don't know about intolerance. I'm not gonna just cut it out of my diet for the next few months if I don't have to. I haven't been feeling much better with the gluten-free diet since I started in early May. That's why I'm wondering if consuming dairy products might be hendering my recovery. On the other hand, it may just take a much longer time before I start feeling any improvements. So the main question I have right now is whether I should eliminate dairy or not.
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#5 T.H.

 
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Posted 21 July 2010 - 11:21 PM

Wow, yeah - misinformed doctor, ahoy.

I'd head right to that celiac center. As you've said, you've seen a lot of information that contradicts her opinions, and considering that much of that information is coming from other doctors AND other celiacs, seriously, I'd ditch the woman.

To contrast? My doctor hears about ANY list of constant, varied physical problems in a patient and he gets really ticked off if doctors aren't testing them for issues that affect the whole body, like food allergies or auto-immune disorders. B/c anything that affects the whole body can, big surprise, cause problems in the whole body. <_< My depression disappeared after celaic, my fatigue. And I hadn't even thought about it, but I haven't had a sinus infection or sinus headaches in the year since I went gluten free, and I used to get them every other month.

woo hoo, gluten-free diet!

My skin is definitely better. I heal better from injuries right now. I am less angry and I worry less.

Again....ignorant doc, big time.


I just saw a second GI in Champaign-Urbana, Illinois yesterday. She is with Christie Clinic. I don't want to name names, but if you contact me personally I will tell you who she is.
Anyhow, she looked over my results and said that I have a mild case of Celiac disease. I told her about my symptoms: fatigue, insomnia, restless leg syndrome, acid reflux, acne, easy bruising, frequent nose bleeds, sinus pressure and congestion, depression, anxiety, frequent yeast infections, some weight loss. She said she didn't think that many of these symptoms were related to Celiac at all and that they may never go away. But I have read in many sources that these can all be symptoms of Celiac.
I asked her about gluten free lipstick, soap, lotion, etc and she said that it's not an issue and not to even think about it. I also asked her if I have a potential to gain a lot of weight on this diet and she said very few people gain weight on this diet and not to worry. I also said that I heard that rice, corn and potatoes have a lot less nutrients than wheat and can be empty calories, but she said that they all have the same nutritional values. I asked if I should be eating more grains with more nutritional value (quinoa, amaranth, etc) and she said not to bother.
I also asked her if I should go dairy free for the next few months (as I haven't gotten much relief yet from the gluten-free diet I've been on for 2 1/2 months). She said I could if I wanted, but she seemed rather indifferent about it.
Needless to say, I'm a bit confused and frustrated with this appt. Is it my imagination, or does she have a lot of misinformation? I've read many books written by professionals that contradict much of what she told me.
I think I should maybe contact the Celiac center in Chicago next as they might be more informed.
Any thoughts?


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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#6 GFinDC

 
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Posted 22 July 2010 - 07:01 PM

You can always eliminate on a trial basis. If you take it out for a month and don't fell any better, then maybe it isn't a problem for you. Since you are still having symptoms, it makes sense to start somewhere in your troubleshooting. Dairy is as good place to start as any, although soy would be tie IMHO. Really, eliminating soy is a good move for anyone.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#7 Coolclimates

 
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Posted 20 September 2011 - 06:56 PM

well it's been over a year since I made this post and needless to say, I never saw that doctor again. At this point, I'm not concerned about dropping names, as I've spoken to another Celiac in my town who thought this doctor was useless. Her name is Dr Nugent at Christie Clinic. Since then, I've been going up to the Chicago Celiac center. They are tons more knowledgable about this than in Champaign-Urbana. The docs don't know crap here. Anyway, as it turns out, my Celiac disease was a stage 3 out of 4 stages, or partially blunted villi. The doctor told me that my celiac disease was actually quite advanced. Now since then I have switched doctors in Chicago because the prior one was very rude and inconsiderate and said I was being "paranoid" about my diet and that I needed "psychiatric evaluation." That was Dr Semrad. I have no idea why she was so unpleasant to my mom and I. Anyway, I have started seeing Dr Sonia Kupher and she seems much friendlier. I will be getting my blood tested again next month. After a year of being on the gluten-free diet, I was still quite sick with celiac disease (and this was after Semrad accused me of being paranoid and that it was all in my head)...since then I've been much stricter about my gluten-free diet. I got lots of allergy tests to see if there was anything else that was preventing me from healing, but no allergies were found. I had been eating out often in restaurants and although many have their best intentions, I think I continued to get exposed to gluten via cross contamination. I also found some other foods that I had been eating that were questionable.
Anyway, I've been on this diet for nearly 1 1/2 years so I really hope there is some improvement when I get tested again in October.
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