Clarification From Doctors Visit

[jtangema]

Hi,

I met with my GI doctor last week. I was diagnosed in February and have been on the gluten-free diet since then. I haven't felt any differently since then. Last weekend I ate something that had wheat in it (didn't know til after i ate it) and didn't get any symptoms afterwards. So I visited my doctor to follow up and make sure I am doing things correctly.

He told me that it isn't worth doing another blood test to see if I am still being contaminated because some people do get better levels with the diet and other people don't see any changes in their numbers even on the diet. He told me that I just have it very mild and that I may never get symptoms from eating gluten. I asked about other food allergies and he didn't seem too concerned about testing for that- he said I could do a fructose and lactose intolerance test, which I will do.

I am just concerned because I didn't get any answers out of him and am very frustrated. I don't know it I need to change something or if this is just the way it will be. Any help would be great!

Thanks

Jennifer

[CarlaB]

How were you diagnosed? Were you feeling bad last Feb. when you started the diet -- what were your symptoms that made them suspect celiac? That info would help me answer you more specifically.

[Ursa Major]

Oh, no, not another clueless doctor! He is utterly wrong about numbers not changing for some people even when on the diet. If that happens, it means that they aren't really gluten-free, so is significant.

There is no such thing as having celiac disease very mild. You either have it, or you don't. Some people get terrible symptoms, and apparently you don't. But that doesn't show the damage that occurs in your intestines. I've heard of people who's villi were completely destroyed, yet their only symptom was anemia!

You may want to eliminate dairy (and I mean ALL of it) and soy, to see if it makes a difference. Those two are the most common ones people with celiac disease have also. Also, both can destroy your villi as well.

If you see an improvement, that means that one of them (or both) are a problem as well. Most people with celiac disease can't tolerate dairy at least for a while, until their villi are completely healed. Some are able to have it again after that.

Also, have you made sure you have eliminated all possible sources of cross-contamination? There is so much doctors don't know, and therefore don't tell you. You need to go through all your personal care products, as many contain gluten. Check your shampoo, conditioner, mousse (if you use any), lotion, lipstick/lip balm, soap, toothpaste etc. for things like 'wheat germ oil', barley extract and oat bran. Replace everything that has one of those with gluten-free brands. Also, watch out for vitamin E, as it is often made from wheat germ oil.

If you still use your old toaster you're likely glutening yourself. The same goes for plastic colanders and wooden cutting boards and cooking spoons, and scratched non-stick cookware.

Okay, now that I set your head spinning, I'll let you digest that. There is more, but this will do for now.

I hope you figure it out. Forget about your doctor, it's better to figure it out yourself, you can do it with help from this site!

[chrissy]

this is exactly why we do follow up tests on our girls----to see how well they are staying gluten free.

[AndreaB]

I am one that didn't have symptoms with eating foods, that I knew of. I had allergy testing done and got the results in April and then went through enterolab in May (see sig). Now if I get glutened I have stomach/intestinal distress until it clears my system but it's not bad.

Stay gluten free and I second Ursula. Go soy and dairy free. I would suggest going off of both of them for 4-6 months and then adding back in one, if you desire, after that to see if you have a reaction.

I am gluten, soy and dairy free and have posted in the recipes section some recipes that I have from some cookbooks. It's an adjustment but totally doable. Many on this forum are free of those 3 things. Many more are free from 2 of them.

[gfp]

Oh, no, not another clueless doctor! He is utterly wrong about numbers not changing for some people even when on the diet. If that happens, it means that they aren't really gluten-free, so is significant.

Yes but I think in this case its possible the advice isn't SO bad... perhaps just confusing....

There is no such thing as having celiac disease very mild. You either have it, or you don't. Some people get terrible symptoms, and apparently you don't. But that doesn't show the damage that occurs in your intestines. I've heard of people who's villi were completely destroyed, yet their only symptom was anemia!

You could also take it that the GI means symptoms wise.... I mean reading jtangema's post and allowing for the normal level of confusion we all mostly had when first diagnosed I think what he meant was pretty much what you just said. That is he was refering to symptoms ... He obviously made it clear that this didn't mean it was OK to cheat so I think the "mild" he's refering to symptoms.

On repeated antibody testing ....

I think this is completely different for adults and kids....

With kids it is necassary because the parents need to know how well the kids are keeping to the diet. In adults I can see why he doesn't want to keep testing... (my GI always wants to test me amd I refuse) ...

The logic here is if you have been accidentally glutened or are just not keeping to the diet.

Someone might not react quickly to a single glutening in terms of antibodies... and antibodies are going to hand around for a long time after.

In my situation, I know from time to time I get glutened through eating out... its a fact of life of eating out IMHO and I do everything to minimise it but you can't eliminate the risk other than not eating out.

So keep testing me randomly and I'll have elevated levels from time to time BUT I do understand why.

However: andthis is a big however...

You may want to eliminate dairy (and I mean ALL of it) and soy, to see if it makes a difference. Those two are the most common ones people with celiac disease have also. Also, both can destroy your villi as well.

If you see an improvement, that means that one of them (or both) are a problem as well. Most people with celiac disease can't tolerate dairy at least for a while, until their villi are completely healed. Some are able to have it again after that.

Also, have you made sure you have eliminated all possible sources of cross-contamination? There is so much doctors don't know, and therefore don't tell you. You need to go through all your personal care products, as many contain gluten. Check your shampoo, conditioner, mousse (if you use any), lotion, lipstick/lip balm, soap, toothpaste etc. for things like 'wheat germ oil', barley extract and oat bran. Replace everything that has one of those with gluten-free brands. Also, watch out for vitamin E, as it is often made from wheat germ oil.

If you still use your old toaster you're likely glutening yourself. The same goes for plastic colanders and wooden cutting boards and cooking spoons, and scratched non-stick cookware.

Okay, now that I set your head spinning, I'll let you digest that. There is more, but this will do for now.

I agree 100% ... as I have repeatedly said..just post diagnosis is when we were all at our lowest both physically and mentally.

My heartfelt advice for ANYONE newly diagnosed is do it 110%....because this will set you into recovery much faster and not keep setting you back while you gain knowledge on other issues like hidden gluten and CC.

I have to say I don't think this GI is half as bad as most because he is actually treating the adult patient as an ADULT... what they are missing out of is what you can only learn by going gluten-free ... which is all the potentiual sources of CC and hidden gluten.

jtangema: Its perfectly normal to be confused at this point. we all were too.

I hope you figure it out. Forget about your doctor, it's better to figure it out yourself, you can do it with help from this site!

I wouldn't say forget this Dr. they seem at least 50% clued up which is 49% higher than most GI's! Honestly I think this is a GI you can work with. The ones I would say forget are the ones who insist on repeated challenges ....I think your confusion is probably not understanding the GI and that doesn't mean your stupid ... diagnosis is often like a bombshell and when we walk away we are often left confused simply because it was too much to take in.

My advice is pretty much as Ursual said....

Firstly eliminate gluten 100% to the point of no possible contamination.... prepare yourself for 2-3 months of cooking everything yourself... because in this tiome your body will repair AND you will learn a heck of a lot ...

When your first diagnosed you have maximum damage so your whole digestive system is functioning at minimal efficiency. Just a single accident can knock you back a week in recovery so its like 3 steps forwards and one back.

If you can then simply take away that risk as much as possible... including pans, toaster ovens and stuff.

This will make it much easier to stay gluten-free ....

Once you reach a point (you yourself will know) then you can start experimentally adding eating outside the house (its a whole new game.. you have to transfer what you know to a waiter and make sure he tells the chef... BUT you need to be very certain to do this efficiently)

Foods like soy and dairy do affect a lot of people especially at first because the intenstines are so damaged that these react as well. My diary tolerance is pretty much linked to how well I have been gluten-free... whne I have an accident my dairy tolerance plumets .. when I'm good for a long time its much better and I get very mild reactions sometimes.

Soy I have always been OK with (so gfar as I can tell) BUT... I choose to limit it...

I don't think my body processes it too well bUT also I don't want to start eating a lot of it and end up with another intolerance! This would seriously limit what I could eat.

Okay, now that I set your head spinning, I'll let you digest that. There is more, but this will do

for now.

Couldn't agree more