Going Off Gf Diet?

[judy05]

I saw my gastroenteroligist last week and he threw me a curve, I'd

appreciate your input on this. I had an elevated IGA, biopsy was neg.,

no damage to villi, but I did have severe acid reflux, bloating, and

other IBS types of symptoms, including pain and constipation.

After a year on the gluten-free diet and 6mos DF, I am doing well, lost

25 lbs and generally feel better, not great but better. I'm still

having insomnia for which he prescribed Lexapro (seems to be the

drug of choice this year). Anyway he is trying to increase my serotonin

levels. After 2 weeks on the med he wants me to go back on gluten,

he doesn't believe I have a casein intolerance and doesn't think I

have celiac because I don't have the genes.

I asked him to do allergy testing because I want to know everything

that I am allergic or intolerant of. He absolutely refused, said he

didn't believe in them. He said I would have to see an allergist.

I respect him, because in the beginning he was the first one of

many doctors who seemed to know right away what my problem

was and tested me. Now I don't know what to think or do. He is

a professor at the University of Pittsburgh but I think he is all wet.

I stopped the Lexapro because I felt like a zombie. I left a message

for him to call me on Monday. One thing in his favor, he has diagnosed

250 celiacs in the past 2 years, which is why our supermarket has

added a lot of gluten-free foods.

I am planning on getting my own testing done by York Labs and since

I have learned to live with this diet I think I will stay on it because I feel

better. I would appreciate any and all comments. Thanks...

[darlindeb25]

once again judy--you have to do what you feel is right for you and i think you already answered that--you feel better gluten free and you plan on staying that way--i will never go back to gluten--i hated my life in gluten days---you have only been gluten-free for 1 yr--maybe in time the insomnia will go away and maybe it isnt related to celiacs--maybe its stress, overwork--there are many reasons for insomnia--maybe you are still getting a source of gluten that you dont realize---now i realize that too much soy makes me restless at night and leg pains come back--i was eating barley for 2 weeks without symptoms-doesnt mean it wasnt doing damage--------anyways, i think you answered your own question deb

[Agee]

I don't get why he wants you to go back to eating gluten. If you feel better not eating it then what's the point? Does he want to see if your symptoms return? It's not like gluten-containing foods have nutrients that you can't get other ways.

This is one reason why I'm really reluctant to go to a doctor to get a "real" diagnosis - first, I will have to go back to eating gluten to be tested (and honestly, there is not enough time in my day to spend 2+ hours in the bathroom and do the rest of my life as well), and 2nd, I have yet to be convinced that there's a point to it. Doctors aren't God, and in the end we are all responsible for our own health.

Agee

[Melanie]

I think using York labs (and they do seem legit to me) would be great because then you can see if you are allergic to other foods that may be causing you not to feel great.

I did reintroduce gluten/wheat and do have reactions when I do so I know for sure that I have some issues with wheat. I don't know what: celiac, gluten intolerance or just a wheat allergy? When you do this, you don't have to eat it at every meal, and you don't have to eat it everyday to get some reoccurance of symptoms. It will give you some answers and information to give your doctor if you do have a reaction. You may not have celiac but you could still have issues with wheat and this "challenge" will provide you with that information. Yes, if you do have issues, you may damage your villi but these things are amazing and their cells replace themselves every three day normally. If you really damage your villi rather than just the outer cells, it will probably take longer, but you will heal. Sorry to advocate trying gluten again! I know this won't make people happy, but I do feel it gives powerful information.

Yeah, I agree with your lexapro statement. It is like the new wonder drug. That is the antidepressant they prescribe just like they prescribe ortho-tri-cyclen to everyone when really these aren't the best pills for everyone. I don't know what to tell you about insomonia. I'm having a little bout now and it sucks! Normally I sleep really well. I think for me it is stress though.

Good luck with whatever you try! Melanie

[tom]

I couldn't believe the Dr i saw last week recommended that i eat a 1/2 slice of bread every day for a month, so he could get bloodtest results. I had specifically looked for a doc who wouldn't be so ignorant. I haven't had real bread in yrs, tho only 100% gluten-free for 11 mos.

I thought i'd made it very clear to him that i will NOT be ingesting gluten, yet 15 mins later he's AGAIN asking me to eat poison for a month.

And he's Stanford's top celiac disease guy !! And assoc w/ celiacsprue.org. (Dr. Gary Gray)

And Judy. when he says "don't have the genes", does that mean u had the genetic tests and had no dq2, dq6 - or just that your known ancestry isn't northern euro etc , where celiac disease is most prevalent ?

[MySuicidalTurtle]

Even if you don't have Celiacs it doesn't mean you can't do the diet. . .kinda like how some people do't eat meat or animal products even though they could if they wanted. Do what you want to do and put what you want into your body.

[tarnalberry]

I'll be the first disenter, and say that you may want to consider what he has to say.

You've got quite a lot of evidence against the dx of celiac disease here: gene testing (I presume, based on what you write), negative IgG's (again, a presumption based upon what you wrote), a negative biopsy (from what appears to be a doctor with reasonable biopsying techniques if he's diagnosed so many celiac disease'ers), and some remaining symptoms.

I'm not saying you don't have celiac disease - you had elevated IgA's (though you didn't mention which ones) and have seen some results from the change in diet. But I would ask what else has changed in your diet (and life) in the past 11 and 6 months that may also have made this change.

It's worth considering that you may not have celiac disease - and I think your option of checking into food allergies is a good one. (I'd probably also do a dietary challenge myself, but that's a harder decision to make.) Of course, it could be that you are one of the small number of gluten-intolerant people without the genes and without the damage and that you should stay gluten-free (and CF, perhaps), but I wanted to note that he's not totally off his rocker for his suggestion.

[Guest shai]

I stopped the Lexapro because I felt like a zombie.

Just as an aside, I started taking Lexapro about a month ago for post-partum depression. It does make you feel out-of-sorts at first, but after a couple days that side effect wears off. The drug starts working within a week (for me anyway) and now I feel no side effects. If you give it a try again, take it before bed and the zombie effect might wear off by the time you wake up.

[judy05]

Shai,

Thanks for your reply. I took Lexapro 1/2 tab for 7 days. I

took it at bedtime. It helped me sleep for a few hours but

I couldn't get fully awake the next day. I do all the driving,

because my husband has no patience and I prefer to drive.

I didn't feel safe behind the wheel so I stopped it.

I took Amitryptiline for almost a year but I think it can cause

weight gain. My Dr. is supposed to call me tomorrow, I really

need something to help me sleep. he seems to think my

serotonin levels are too low.

[judy05]

Tom,

My genetic tests were all negative, I don't have the genes.

My ancestry is all northern European, mostly German pioneers

who came early in the 1700's. I did have a gg grandmother from

Wales.

MY mother and grandmother both had digestive problems.

My mother is 94 and suffers from Dementia and Trygeminal

Neuralgia, which is another good reason to stay gluten-free because

they have both been related to gluten. My Mom also had a

stroke while taking Vioxx, which is a whole different can of

worms. My faith in the medical community has hit a new low

level.

[plantime]

Allergy testing is an excellent idea, however!! Many allergists will not acknowledge an allergy unless the symptom is anaphlyxia. Allergies do cause many symptoms, from anaphylaxia to fatigue to digestive upset to dandruff to migraines, but if it does not cause the first symptom, the doc will not acknowledge it. I have allergies to poultry and stone fruits, they give me migraines, but my allergist said it was not an allergy, and that I could eat all I wanted of them. Now, I am not fond at all of pain, and migraines are the worst. Do I eat them because one doc says I can, or am I kind to myself, and avoid them? I haven't eaten them since I discovered that I react poorly to them. Sometimes you have to weigh the pros and cons yourself. By all means, see an allergist, and gather more information. But the final decision is yours.