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grey

Doctor Vent/good Md In S. Wisconsin?

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So I went in to see my GI today. I had my biopsy last week - total villous atrophy, etc. Positive bloodwork. Serious b12 deficiency for at least 5 years (I give myself weekly shots), nearly non-existent ferritin. I have classic celiac clinical presentation - I've lost now 42 lbs., all the gastro symptoms, all the neuro., migraines, fatigue. Chronic joint & muscle pain, etc etc etc.

I'm asleep in his office when comes in. He says, 'so, it's sprue. Don't eat gluten. You'll be surprised at how many things have gluten. Read the labels carefully. You should feel better in a few weeks. Keep taking the B12 shots. Any questions?"

????????!!!!!!!

Um, yeah, a few?

So, I asked, about being tested for other vitamin defiencies (my PCP thinks I'm probably low in copper, zinc, & magnesium, given my mental confusion & lack of coordination, and possibly K because of my bruising) and about bone density testing.

He thought that was crazy. Everything would clear up once I stopped eating gluten. He used the metaphor of a car with an oil leak. He said you wouldn't just keep putting oil in it, would you? I said, actually, I had a car with a oil leak, and until the oil leak was fixed, I did keep putting oil in it so the car wasn't permanently damaged by the leak. He said but not eating gluten was fixing the leak.

I said but what if my intestines weren't repaired in two weeks - what if it took six months? I should just have deficiencies etc for six months? His answer was basically yes, since the only answer was going to be in the end that I wouldn't eat gluten and there was nothing else to do - the outcome was the same. And why bother with the bone density? I clearly didn't have osteoporosis since I hadn't broken anything.

I can't take a multivitamin because I vomit them up or have other GI problems with them (even the gummi kids ones) and he said that therefore there was nothing to be done. I wasn't sick enough and obviously wasn't wasting away. Am I really not sick? Is this really just the way it is? I just ignore the deficiencies? Don't they matter? I thought that they could do damage.

The thing is - I lost 5 lbs this week. I just keep losing weight and I'm losing it faster than I was. I'm thinner than I was in college. My b12 shots have gone from every mo to every 3 weeks to every week and I'm crashing after 4 days. I've been like this for years with a lot of symptoms but the weight loss started to kick in the fall (Oct) but it's been speeding up. I'm definately sicker than I was.

I'm been gluten-free for a week and I felt good for 3 days, maybe and now I feel like crap. I think I'm lactose intolerant too. I still have D and everything else.

He did say I should get on the internet if I had more questions and to call back if I didn't feel better in a couple months. Oh, and I got a dietician referral, but I'm not sure I want anything more to do with these people. What's the point?

I'm really upset. I'm in a new place, I don't really know anyone here, & I don't have anyone to talk to about this. I've got so much on my plate at work (and I have to pull it together) but I'm so exhausted) and feel close to as bad as I've ever felt. I'm sorry to lose it and write a long post. Put it's been hard & Ive tried to be positive but I think I just cracked. And I'm so scared. If anybody made it this far, thank you from the bottom of my heart for reading.

grey

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Grey, I am really sorry that your GI is an ignorant jerk. Forget about him, and ask your regular doctor to test for the other deficiencies. Because they DO matter. If your ferritin is so low, you should probably get iron shots, too, to give you a boost. Make sure you get your vitamin D tested as well, as without it you won't be able to use calcium and magnesium.

And what nonsense, that you can't have osteoporosis because you haven't fractured anything! If you haven't had a fall you wouldn't, unless it is severe.

I was unable to take vitamins for six months after starting the gluten-free diet, they made me really sick. But I could eat watermelon (lots of potassium, more than bananas), I was fine with cod liver oil (vitamin D and A, as well as omega 3 essential fatty acids), I did okay with the vitamin C that dissolves in water to be like pop.

At first I was unable to eat anything raw, even fruit. Raw food would give me stomach cramps and diarrhea (no salad for six months, either).

Your deficiencies will take a very long time to get better without supplementation, maybe years. What garbage that you shouldn't supplement. You may have to hold off on it until your stomach has healed enough to handle supplements. But then you really, really need to take them to get better as fast as possible.

You may have withdrawal symptoms that make you feel terrible right now. And yes, you are very likely at least lactose intolerant right now, since the tips of your villi are supposed to produce the enzyme lactase to digest dairy. But since your villi are too damaged for that, you shouldn't have any dairy products for probably at least six months.

Don't be sorry to have let it all out here! That's what we are here for, to support each other. If you can't vent your frustration here, what would be the point of this forum?

I wouldn't bother with the dietician, either. You will get better advice here than most dieticians would give you.

At least now you have your answers, and you know what is wrong with you. Is it possible to take a leave of absence from work until you feel better? I think that dealing with being ill, living in a new place, learning the new diet and trying to get better is enough for now, without having to deal with work.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I agree with you. I think until you have other tests, you won't know how to get better.

I had lots and lots of blood tests before the biopsy, etc., but my calcium levels were never tested.

I didn't not know I was deficient in calcium until my specialist ordered this test (I had the opposite problem, my regular doctor wouldn't order certain tests). And the specialist ordered a bone density test. Now I know to take calcium/vit D supplements every day.

I agree with Ursa Major about the iron shots. What if you're not healed right away... why take iron supplements if you're not going to absorb them? And what if you're B12 is low? Are you supposed to be in a fog and drowsy for months until you're better?

I hope you can get your regular doctor to test you for the deficiencies.

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THANK YOU both so much for replying - it's been really hard. I don't know what I would do without this forum. It really helps me feel less crazy and alone.

On Friday, the gi office called and tried to give me info about diabetes and argued with me at first when I said I didn't have diabetes!!

I hoping to find a celiac specialist or doctor with LOTS of recs from gluten-free/celiacs. My primary care doctor doesn't really get that gluten does damage that it takes time and help to heal. And have them order the tests or order my PCP to do them. Or somethiing. I don't think I've had my calcium tested. It's scary that that damage could be there.

I'm hoping I can find someone good I can see soon - getting my iron/ferritin up would help, and I know that my PCP had suspected that I was low on other things before she was convinced that the diet would solve everything. She just doesn't quite get that gluten has done damage that will take time to fix before food will do its proper job.

A leave-of-absence would be wonderful. I have deadlines early this month and then I'm going to try very hard to take a break. Thank you also for the raw food tip - I was trying to eat salad (worrying about vitamins); I stopped this weekend and that helped. I'm going to try the other suggestions too. I'm learning that I can't jump into the cookbooks, I need to start slow and gentle too.

Thank you again-

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Hi there,

I am so sorry to hear of your struggles. I am at the start of all of this too and have lost about 16 lbs. since Nov., but since I have gone gluten-free/lactose free, I have been able to maintain my weight and feel better.

I am from Waukesha, WI, and the recommendation to start a gluten-free diet came from a nutritionist that I went to see at an integrative health clinic. Here is the link to the clinic with bios. of the doctor and nutritionist on staff. http://www.pathwaysmed.com/

I found out about them through the Good Harvest Natural Food Store. Betsy Hicks does presentations there on eating gluten free and IBS. I couldn't go to the IBS seesion and decided to call and get an appointment becuase I was going to Disney with a group and needed to know what I could eat. She asked me if I ever considered gluten to be an issue and I said no because I had a colonoscopy and they tested me for celiac and nothing came up. She asked me to try the diet and see how I felt. I felt better within a few days! I had already been nursing my system and was staying away form lactose and raw foods because of the d and how noisy my intestines would get after eating those offending foods, so I don't think any of the detox got to me as badly.

I would suggest trying this group if you can. The downside for me was that they aren't in my insurance group, but it was worth the money for the consultation alone. They will listen and give you resources. Since you are diagnosed, you are already on your way.

A couple of other gluten-free resources in SE WI, (not sure where you are located) are Good Harvest www.goodharvestmarket.com

the Gluten Free Trading Company

www.gluten-free.tc/AboutUs.html

and Molly's gluten-free Bakery.

I really hope this is helpful and that you are able to gain strength and health.

Sincerely,

Terri


Diary free 11/06-6/08

Now using a small amount of low-lactose dairy such as aged cheeses and yogurt. Yum!

Gluten-free since 4/07

"When you row another person across the river, you get there yourself."

- Fortune Cookie

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Grey, here is the link to another forum: http://gfnavigator.org/forum/index.php The administrator of this forum is from WI too. His name is Al (aklap) and I am sure he can give you lots of advice for your state and what's available. He is a great guy, full of info.

We all have our share of ignorant doctors. They are not so much ignorant, as just not informed. I am dealing with ignorant doctors now with thyroid problems.

Some of us will always need to take supplemental vitamins--some will always have problems with malabsorption.

Any questions, feel free to email me.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Grey

Your dilema sounds like what my husband went thru before he was diagnosed. What was doctor's advice about diabetes? Not saying you have it, but I'd be curious to hear what they had to say about it. After you get their advice you can do with it what you will.

It took several months before my husband's symptoms finally died down. Eat as little processed foods, even if they are gluten free, as possible. For my husband, all fruits & vegetables, raw or cooked bother him. He can only eat potatoes (vegetable).

Hope you feel better soon (you should) and keep your hope positive.

D.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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tcat,

Thank you for the references - I will check them out. I am in Beloit, where there isn't much in the way of resources and I need to drive either towards Madison or Milwaukee (I think Waukesha is that way) for most things. My insurance is pretty flexible, so I will see what they might cover.

darlindeb,

Thank you for the link and the reference. I'm going to contact Al. I also appreciate the reminder that the doctors are not informed. As frustrated and angry as I was (and still am to an extent), it's not helping - it's definately hurting, actually - but this doctor's not out to get me personally, he just doesn't know better. It does make me want to throw over my job and start going med school to med school to personally tell doctors about celiac. But you're very right to not focus on the negativity.

D., The doctor's nurse giving me info. on diabetic diets, not much, she was mainly getting ready to mail me info. The doctor doesn't really think I have it, his nurse just made a mistake and thought "diet"=diabetic, because they don't have a lot of celiacs. Or that's my interpretation. I'll see what I get. I'm following Ursa Major's advice (thanks) about avoiding salads and dairy and feeling a little better. I'll try some potatoes and see how they work out. Thanks for the advice, especially about trying to keep hope positive.

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Hey Grey --

I go to UW-Madison and see a nurse practitioner at the UW Hospital -- her name is Patrice Kennedy. I've been seeing her for about 2 years now and she does a great job at taking care of me! :) She works under/with (?) Dr Reichelderfer who I believe is the head of the GI department (I'm not 100% certain about that), but he's the guy who gave me my second endoscopy and colonoscopy! He has quite the personality -- in fact, he explained to me how he had to give himself an enema.... Like I said - he's quite interesting!

Anyway, I definitely recommend going through the UW Hospital and Clinics for celiac disease. They are very personable and actually take the time to listen to you and answer questions. They were also the ones who discovered I had mild Crohns (after going to a doctor in Green Bay who said even though there was evidence of Crohn's that it was probably just Celiac.... right).

Anyway, good luck! :) Let me know if you have any other Wisconsin-related questions!

-- Erin

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Hi Erin, Thanks for the UW ref. I don't think my doctor looked for crohn's or anything else.

Did you see a dietician in Madison too? If so, were they very good with celiac?

thanks,

grey

Hey Grey --

I go to UW-Madison and see a nurse practitioner at the UW Hospital -- her name is Patrice Kennedy. I've been seeing her for about 2 years now and she does a great job at taking care of me! :) She works under/with (?) Dr Reichelderfer who I believe is the head of the GI department (I'm not 100% certain about that), but he's the guy who gave me my second endoscopy and colonoscopy! He has quite the personality -- in fact, he explained to me how he had to give himself an enema.... Like I said - he's quite interesting!

Anyway, I definitely recommend going through the UW Hospital and Clinics for celiac disease. They are very personable and actually take the time to listen to you and answer questions. They were also the ones who discovered I had mild Crohns (after going to a doctor in Green Bay who said even though there was evidence of Crohn's that it was probably just Celiac.... right).

Anyway, good luck! :) Let me know if you have any other Wisconsin-related questions!

-- Erin

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