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Post Diagnosis Diet Confusion From Md
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Hello everyone-

I have recently been diagnosed with Celiac, and am experiencing some confusion with the instructions my doctor gave me regarding my diet.

I have yet to get my biopsy, as I am low income and have to wait for the county to approve me for this procedure, but my blood test came back positive, and I have been fairly ill for the last five years.

After diagnosis, I asked my doctor to go over the gluten free lifestyle and the best ways to avoid cross contamination, as well as keeping a gluten free kitchen (my partner still eats gluten).

According to my doctor, she said there is no need for me to worry about cross contamination, or eating wherever I like. She said that it is stupid to have "celiac take over my whole life," and that as long as I am not intentionally ingesting gluten that I should heal, since my nutrients "aren't that bad." This is contrary to everything that I have read, or heard about celiac disease up to this point, and I am not apt to believe that I was given the best advice.

If someone could clear up the confusion for me that would be great. I am being really diligent about not eating gluten because I am tired of being sick. And if cross contamination is going to continue to cause me to have bouts of horrible digestive issues like I've been having, I am not understanding the advice my doc gave me.

Thank you so much!

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Ads by Google:

Uninformed doctor is uninformed.

So not true.... not true at all....

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Your doctor is an idiot for a variety of reasons.

Telling someone to go gluten free before an endoscopy is, in short, moronic. It can lead to a false negative. Of course, false positive blood work is pretty much unheard of so it isn't the worst thing in the world except that your doctor (based on his level of stupidity) will then cease to take anything you say seriously.

No doctor would dream of telling someone with a nut allergy not to worry about cross contamination. It could literally kill them. I can't fathom why a medical profession, of all the people, would be one to not take a medically necessary diet seriously. The first time you eat out, share the toaster, don't clean the counter well, let your partner taste your dessert off your fork or some such and end up locked in a bathroom for a night you'll see that it does need to be taken seriously. Please, please, see the newbie thread over in the coping section.

Your doctor is grossly misinformed and if you will be relying on someone for continued medical care in the future after an endoscopy I highly recommend seeking someone with a background in celiac in your area if at all possible. At the very least a "go google it" is far less dangerous than what your doctor is doing, at least then the doctor is admitting that they aren't informed and they can't help.

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Dear God. :blink:

Congratulations on not taking the doctor's advice on this one.

Treat it as if you have a peanut allergy. Altho the mechanism and reaction is slower, and it won't kill you outright, quickly, very small amounts of gluten, ingested daily, continue to stimulate the auto immune response which tells your body to attack itself, which then leads to another series of physical ailments. Why risk this ?

And you will become more sensitive to trace amounts, over time. So maybe the first few years, you won't get hammered by a bit of cross contamination, but later on, you very well might be.

Some doctors will tell patients not to be perfectionists, under the impression that if they give them permission to be less that absolutely perfect, then the pressure lessens on them to cheat. So you may have a doctor with a diabetic patient say maybe a treat once or twice a year won't kill you. But, people will interpret that too liberally sometimes, and think that if they don't "feel" sick, they then can keep on cheating once a week, etc. Like diabetes, gluten- damage may not show up immediately, but it is going on, inside, and it will malnourish you over time, creating not only problems with your gut and digestion, but your skin, liver, gall bladder, stomach acid/reflux, bones, kidneys, bladder, reproductive organs, nerves, brain function, thyroid..... I could go on and on. There is also a neurological variation which attacks the brain and nerves and even can affect your vision, and causes a loss of balance and symptoms similar to MS. The "neuro- people" (& that's me in that category) tend to be more sensitive to trace gluten, just as the DH (skin rash) people are.

The easiest way to avoid cross contamination is to have a gluten free home, if that is not possible, (and don't feel bad if that doesn't work out, the significant others vary in how they handle this, mine is flexible and will eat anything that I bake) then your work spaces and your porous utensils and porous cookware (plastics, rubber, wood, teflon, cast iron) should be clean and dedicated gluten free. This can be as simple as laying down a paper towel automatically every time you start anything on the counter, replacing or duplicating a few essential cookware items, such as the toaster, colander, cutting board, and tupperware, and go from there. Anything you dip a spoon or knife into, then rub on regular bread or whatnot, should not be used by you, you should have your own gluten free mayonnaise jar, butter, etc. Avoid crumbs ! Paper towels and permanent sharpie markers are your friends. I have a wheat- allergic dog who reacts pretty severely compared to how I do (I have never puked on the floor like that :o) so we had to ditch gluten in ALL of our pet and livestock feeds too, so he wouldn't puke and scratch himself crazy - and he's a drooler, so I don't want him licking me with that stuff, either. The dog, and the horse allergic to certain horse type feeds, which sets off his other allergies, have actually taught me more about cross- contamination in real life than I expected. You can have one cat eating cheap food with gluten, drinking out of a stock tank or water bucket, which the dog and horse have access to, causing a LOT of problems in 3 other species !

If you advance to eating out, it will be trial and error until you find places that are safe and know how to really do gluten free for gluten free, but it is do- able. But you will need to be vigilant, because there are a few that are less than stellar.

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Thank you guys so much for making me feel less insane. It's difficult because for the last few years I was treated as though I was imagining being sick (especially odd considering that my ethiopian feed the children belly that would last for weeks would cause me to shoot from a size six to a twelve within a day). It just felt kind of odd for her to be treating me as though my medical condition was not a "real" medical condition with a "real" treatment. You may as well tell someone who has depression to avoid really horribly written pop songs about love. In short, I think my doc is full of it, and I am glad that I am ignoring her advice. Thanks again, and I am hoping to be feeling better soon!

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Doctors do not learn any thing about diet in med school. Go to an expert and maybe copy this and give it to your doctor.

http://www.curecelia...guide/treatment

Also, I stumbled across this the other day. I'm not too far from U of C- they do amazing work there! Thanks again!

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Please get a new doctor if possible. Also know that any future tests, once going gluten free, will no longer be accurate, so a future negative test does not mean you don't have celiac.

Both my son and I have it and we react differently to different amounts. My son is VERY sensitive, so we avoid any possibility of cross contamination. We don't eat out (unless it is a 100% gluten-free facility) and he doesn't eat any food prepared in someone else's kitchen (unless they happen to be gluten free). He reacts to even the smallest amounts and will be sick for weeks.

Our doctor said to be a careful as you need to be to keep your antibodies at a normal level (retest at 3 months, 6 months, one year).

We even avoid gluten-free food if it is packaged in a facility that processes other foods that contain gluten.

Your first degree relatives also need to be tested . . . even if they have no symptoms.

Cara

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I think ultimately what we should all be going for is gluten free all the time. However, I do think that there's something to be said for assessing your own sensitivity because we are all so different. I've only been gluten free for about two months, my son one, so it's all very new for me. But personally I do eat out and eat some products that are "processed in facilities that also process wheat". My home is %100 gluten-free and I plan out all meals, etc., but I would rather see how we do at this level before getting highly restrictive. Honestly, we allow ourselves small exposure to toxins of all kinds every day. It's not a pretty thought, but we're always finding a balance that works for us.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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