I've Decided To Start A Gluten Elimination Diet Today

[Joyous]

I've planned on waiting until next week, but I was too excited to wait, oddly enough.

I bought rice bread, cream of rice cereal, stuff to make chili, sweet potatoes, apples, instant rice noodle packages, eggs, gluten-free yogurt, frozen vegetables, tuna, and aloe juice. Obviously that won't last long, but it's a start.

A book I read said that food intolerance elimination tests should be done after a woman's period and before PMS... has anyone heard of this before?

Anyways, I'll probably go for a week and a half to two weeks without gluten and then eat something with gluten and see what happens.

[tom]

I have to recommend going a minimum of 2 wks.

P.S. Check your toothpaste!

[Joyous]

Is there a database somewhere of products that do and don't contain gluten?

[HouseKat]

I've planned on waiting until next week, but I was too excited to wait, oddly enough.

I bought rice bread, cream of rice cereal, stuff to make chili, sweet potatoes, apples, instant rice noodle packages, eggs, gluten-free yogurt, frozen vegetables, tuna, and aloe juice. Obviously that won't last long, but it's a start.

A book I read said that food intolerance elimination tests should be done after a woman's period and before PMS... has anyone heard of this before?

Anyways, I'll probably go for a week and a half to two weeks without gluten and then eat something with gluten and see what happens.

Joyous,

Are you planning on getting tested for Celiac at some point? If so, I'd recommend doing that first.

I went gluten-free on my own and after 11 weeks my doctor sent me to the GI doc who asked me to go back on gluten so he could do the blood tests. I agreed to eat gluten for two weeks...I lasted four days. During those four days, all of my symptoms gradually returned and the night of the fourth day - last night - was 11 hours of the big D. I wanted to be put out of my misery. Even Lomotil - which usually works or me - didn't help at all (I took five in six hours). I called the doctor this morning and he had me come in to have the blood drawn ASAP, and I'm now gluten-free again. Will the tests be conclusive? Probably not.

I wish now that I had insisted on being tested for Celiac before I began my gluten-free diet all those weeks ago...I could have avoided this recent misery.

Kate

[Sharon Marie]

Is there a database somewhere of products that do and don't contain gluten?

I just found this site.

Open Original Shared Link

Its full of gluten free foods.

[Joyous]

Thanks, I saved it to my computer.

Joyous,

Are you planning on getting tested for Celiac at some point? If so, I'd recommend doing that first.

I went gluten-free on my own and after 11 weeks my doctor sent me to the GI doc who asked me to go back on gluten so he could do the blood tests. I agreed to eat gluten for two weeks...I lasted four days. During those four days, all of my symptoms gradually returned and the night of the fourth day - last night - was 11 hours of the big D. I wanted to be put out of my misery. Even Lomotil - which usually works or me - didn't help at all (I took five in six hours). I called the doctor this morning and he had me come in to have the blood drawn ASAP, and I'm now gluten-free again. Will the tests be conclusive? Probably not.

I wish now that I had insisted on being tested for Celiac before I began my gluten-free diet all those weeks ago...I could have avoided this recent misery.

Kate

I plan on trying gluten at breakfast and lunch on the 9th and seeing what happens. I'll go back to the gluten free diet for dinner, the following day, and breakfast and lunch on the 11th. After that I'll go back to eating gluten. I have a party to go to the night of the 11th, which is why I am reintroducing gluten on the 9th. (I should know within 48 hours whether or not it's making me sick, right?)

If I get better without gluten and then get worse after eating it, I'll still keep eating gluten until my GI doctor appointment/tests. If I don't get better and/or don't get worse after eating it, I'll just go back to gluten and that'll be that... Celiac seems really likely for me though. Every single medical complaint/problem I've ever had can be explained by having Celiac Disease. Occam's razor is with me on this one, but I'm guessing I won't know for sure until the 11th.

I understand that I'm risking making myself more sick if I have Celiac Disease, start a gluten free diet, and then start eating foods containing gluten again, but I'm too excited to wait. If I wait, the excitement will turn into anxiety. And I most certainly cannot trust doctors and their tests to rule out Celiac Disease. (See Open Original Shared Link for further clarification.)

Basically, if I get the tests done first and they come back negative, chances are I won't want to try a gluten elimination diet and then I'll always wonder if I'm gluten intolerant and feel guilty (and feel like a hypochondriac) until I finally do, at which point the elimination test will be stressful and chances are I won't eat enough and then if nothing happens I still won't know because I didn't do it right and then I'll feel more guilty about it... you get the picture. The best case scenario is that the test would come back positive, in which case I'll have gone through a few months of stressing out about it while waiting to get in to the GI doctor and get the test results. And either way I'd be at the mercy of a doctor's decision on which tests he feels like I should have.

The few weeks of misery I'm risking seem like a small price to pay to avoid the above scenarios.

[Trillian]

I bought rice bread, cream of rice cereal, stuff to make chili, sweet potatoes, apples, instant rice noodle packages, eggs, gluten-free yogurt, frozen vegetables, tuna, and aloe juice. Obviously that won't last long, but it's a start.

I've never found pre-packaged gluten-free bread that's good. In fact, it's awful! You'll probably have to make home-made food if you want to eat gluten-free bread that tastes good - even the boxed kind that you mix and bake is better than prepackaged.

[Joyous]

I really want to eat garlic cloves (roasted) spread on toast, but I don't want to make the garlic if I won't like it in that bread.

(I suppose the logical thing to do would be to try a slice of it with something else first. )

[ravenwoodglass]

Thanks, I saved it to my computer.

I plan on trying gluten at breakfast and lunch on the 9th and seeing what happens. I'll go back to the gluten free diet for dinner, the following day, and breakfast and lunch on the 11th. After that I'll go back to eating gluten. I have a party to go to the night of the 11th, which is why I am reintroducing gluten on the 9th. (I should know within 48 hours whether or not it's making me sick, right?)

If I get better without gluten and then get worse after eating it, I'll still keep eating gluten until my GI doctor appointment/tests. If I don't get better and/or don't get worse after eating it, I'll just go back to gluten and that'll be that... Celiac seems really likely for me though. Every single medical complaint/problem I've ever had can be explained by having Celiac Disease. Occam's razor is with me on this one, but I'm guessing I won't know for sure until the 11th.

I understand that I'm risking making myself more sick if I have Celiac Disease, start a gluten free diet, and then start eating foods containing gluten again, but I'm too excited to wait. If I wait, the excitement will turn into anxiety. And I most certainly cannot trust doctors and their tests to rule out Celiac Disease. (See Open Original Shared Link for further clarification.)

Basically, if I get the tests done first and they come back negative, chances are I won't want to try a gluten elimination diet and then I'll always wonder if I'm gluten intolerant and feel guilty (and feel like a hypochondriac) until I finally do, at which point the elimination test will be stressful and chances are I won't eat enough and then if nothing happens I still won't know because I didn't do it right and then I'll feel more guilty about it... you get the picture. The best case scenario is that the test would come back positive, in which case I'll have gone through a few months of stressing out about it while waiting to get in to the GI doctor and get the test results. And either way I'd be at the mercy of a doctor's decision on which tests he feels like I should have.

The few weeks of misery I'm risking seem like a small price to pay to avoid the above scenarios.

If you are going to try out the diet and then challenge it the time to do it is NOT two days before you go to the party. You may very well be to sick to go. If you have to do things like this, (and you really should do the diet strictly for at least a month or two to see if it helps), I would make the party my challenge point. Hopefully you will not react that night, but if you consume alcohol be very careful because if you do drink and you do react neurologically you may have unexpected levels of intoxication due to the combined effects of gluten and alcohol.

You could always avoid the confusion and the stress of an invasive procedure by going with Enterolab testing for antibodies to gluten. They can also test for soy, casien, eggs, and yeast in additon to telling you if you are suffering from malabsorption. Those tests can often tell you much more than blood or endo which often show a false negative.

[ravenwoodglass]

I really want to eat garlic cloves (roasted) spread on toast, but I don't want to make the garlic if I won't like it in that bread.

(I suppose the logical thing to do would be to try a slice of it with something else first. )

If you can find Kinnickinnick bread their Italian bread is good and I sometimes use their hamburger buns for garlic bread. Make sure also that you check and make certain the rice noodle soup packets you got are gluten free, many are not.

[Joyous]

If you can find Kinnickinnick bread their Italian bread is good and I sometimes use their hamburger buns for garlic bread. Make sure also that you check and make certain the rice noodle soup packets you got are gluten free, many are not.

Thanks, I'll keep an eye out for that brand. The rice noodles are those Thai Kitchen ones... the package says gluten free.

I tried the rice bread I bought and I like it! It's toasted with butter and garlic cloves on it though, so maybe I wouldn't like it as much if I were making a sandwhich (or something of the like) with it.

If you are going to try out the diet and then challenge it the time to do it is NOT two days before you go to the party. You may very well be to sick to go. If you have to do things like this, (and you really should do the diet strictly for at least a month or two to see if it helps), I would make the party my challenge point. Hopefully you will not react that night, but if you consume alcohol be very careful because if you do drink and you do react neurologically you may have unexpected levels of intoxication due to the combined effects of gluten and alcohol.

Oooooooooooooooh good point. Perhaps I'll make the test date a couple days after the party instead. I'll drink red wine at the party (still may have unexpected effects if my digestive tract is in better shape?) and avoid eating anything with gluten. Do you think a restaurant/banquet steak would have gluten (like in a marinade or something)?

You could always avoid the confusion and the stress of an invasive procedure by going with Enterolab testing for antibodies to gluten. They can also test for soy, casien, eggs, and yeast in additon to telling you if you are suffering from malabsorption. Those tests can often tell you much more than blood or endo which often show a false negative.

That's another option, but it costs more and takes longer than doing the elimination test. It would cost more than going to the doctor, too (but it would most likely be faster).

[ravenwoodglass]

"Oooooooooooooooh good point. Perhaps I'll make the test date a couple days after the party instead. I'll drink red wine at the party (still may have unexpected effects if my digestive tract is in better shape?) and avoid eating anything with gluten. Do you think a restaurant/banquet steak would have gluten (like in a marinade or something)?"

Unless you ask them to give you an unmarinated steak that is cooked in a seperate pan from the ones they put on the 'grill' then chances are they will gluten you. The safest way would be to talk to the chef before the day of the event and tell him your dietary restrictions. Most will be happy to cook your meal safely as long as they know more than 5 minutes before the event. Call the restaurant the day before the event, either early in the day or around 2 or 3 and ask to talk to the chef or have him call you back. I am a retired chef and the last thing any of us want is to make someone ill so don't think it will be a bother. As for the wine just use caution, your right about your digestive tract maybe having a hard time, also many of us have livers and kidneys that do not work quite the way they should because of the antibodies effects on those organs.

As far as the expense of Enterolab is concerned, I wish I had known of them before diagnosis. I do not show up in blood work and the $300 we spent on Enterolab a few months ago was so much less than what we used to have to pay for my testing and meds. The year before I was diagnosed we spent $17,000 (no that's not a typo) on just copays for all my tests, meds, and visits to specialists. All those copays do add up. The response to the diet though is also a valid form of diagnosis if done strictly.

[Joyous]

Hmmm... Maybe it would be best to do the test on the 8th and then just be careful about how quickly I'm drinking on the 11th. (It seems unlikely that I'd still be feeling sick enough to not go to or enjoy the party on the night of the 11th if I eat something with gluten in the morning and afternoon on the 8th?)

[ravenwoodglass]

Hmmm... Maybe it would be best to do the test on the 8th and then just be careful about how quickly I'm drinking on the 11th. (It seems unlikely that I'd still be feeling sick enough to not go to or enjoy the party on the night of the 11th if I eat something with gluten in the morning and afternoon on the 8th?)

You speak of having the test on the 8th and eating gluten the morniing and afternoon of the test. Are you now gluten free or gluten light and just eating gluten the day of the blood test? Or am I confused? If you have been gluten light or gluten free eating gluten just the day of the test will not tell you anything bloodtest wise. If it makes you sick it can be a good diagnostic though. If you are eating gluten to get what you hope will be for sure positive results, you need to know that you have to be eating a full gltuen diet for at least 3 months for the tests to have any chance of being right. Even on a full gluten diet many of us do not show up in blood work.

[Joyous]

You speak of having the test on the 8th and eating gluten the morniing and afternoon of the test. Are you now gluten free or gluten light and just eating gluten the day of the blood test? Or am I confused? If you have been gluten light or gluten free eating gluten just the day of the test will not tell you anything bloodtest wise. If it makes you sick it can be a good diagnostic though. If you are eating gluten to get what you hope will be for sure positive results, you need to know that you have to be eating a full gltuen diet for at least 3 months for the tests to have any chance of being right. Even on a full gluten diet many of us do not show up in blood work.

Oops sorry, by "test" I meant eating gluten and seeing how I feel. I don't even have a GI doctor appointment scheduled yet, and won't until the insurance approval comes through and someone calls me to set up the appointment. After that I don't know how long it'll take to get in. I could be looking at a couple of months.

[WW340]

I have to agree with Ravenwood on some points of your plan.

Once I went gluten free, even the smallest contamination could cause me to have 2 weeks or more of symptoms. If I got cross contaminated on the 8th there would be no way I could go to a party on the 11th. I would hate to think about how I would feel having actually eating a gluten item.

I would suggest that you either wait until after the party, or be gluten free until the night of the party. My onset of symptoms after a cross contamination usually start in the morning after the glutening, so I could get cc'd at a party and still be ok until the next morning. Some people react much more quickly though.

Another concern about your plan is that you are only going to do this for about 2 weeks. While some people show improvement in 2 weeks, others require longer.

I always recommend at least a month to 3 months for a trial period. For one thing, it takes that long just to get proficent with the diet. There is a steep learning curve to this thing.

The next concern is that if you have read much on this forum you will find a tremendous amount of regret, doubt and agonizing over the fact that one did not get tested before going on the diet. Your best opportunity for a positive result on formal blood testing is prior to going gluten free.

Once you have gone gluten free you may not be able to tolerate going back on gluten long enough to get a positive result. Also, you may always wonder whether it is gluten intolerance or celiac disease. Some people are bothered by the distinction, others are just happy to feel better.

If you have insurance, I would suggest you wait and do the full testing including endoscopy. Even if that is negative, you are no worse off, then you can try the diet to see if you have gluten intolerance.

I can understand you being enthusiastic and anxious to start, but you need to consider how you will feel about things down the road a bit when the enthusiasm wears off and you are fending off the doubts and doubters.

Just my 2 cents. Good luck with whatever you decide.

[Joyous]

Excellent advice. What the posters in this topic are saying is very logical and rational.

I would be especially interested in knowing if it's gluten intolerance or Celiac disease (honestly right now I don't even know what gluten intolerance causes that Celiac disease does not, and vice versa).

However, I'm doing it this way in spite of its illogic and irrationality because whatever the consequences of not waiting, it's worth it to me (for the reasons described earlier in this thread).

The test I'm doing isn't the time I'm not eating gluten, it's the couple days after I eat it again. (This elinimation test works not by seeing if all symptoms go away in the absence of gluten in my diet, but seeing what happens when I eat gluten after not having eaten it for a week. When I eat gluten again after not having eaten if for a week, how do I feel immediately afterwards? How do I feel the next day, and the day after?)

I don't want to test at the party for two reasons. First of all, the social setting and alcohol (and time of day, to some extent) could make the effects of having eaten gluten less apparent to me (such as drowsiness right after). Secondly, I'll be drinking, and if I feel horrible the next day I may not know if I should attribute it to the alcohol or the gluten.

I may reintroduce gluten sooner if it will prevent me from healing enough to be much more miserable for a longer period of time after starting to eat gluten again (and to give more time between trying gluten and the party). I'll have to avoid gluten for a couple days after trying it, too, then go back on it until I have the tests done.

Would not eating gluten for 7 to 14 days and going back to eating gluten and then having a test done a couple months later alter my results?

I'm willing to risk not being able to go to the party due to still being sick. Even that would be better than having to wait for a doctor and test results before having any idea if gluten is the problem.

If I did decide to test gluten sometime after the party and contact the restaurant and ask the chef to prepare my steak separately, would I also need to make sure my vegatables and whatever other side dishes are also prepared separately?

[Joyous]

I think I messed it up. I picked yesterday for my trial day. Yesterday I had some minor digestive issues and some sleepiness after breakfast, then I was okay (except for craving foods with gluten in them?). Today I was feeling quite horrible, and then I realized that it was 3:00 pm and all I'd had to eat today was an apple and some yogurt. Now I've got that teary anxious feeling that I get when I don't eat enough (which I now that I think about I hadn't experienced during the gluten elimination period of this experiment), and I don't know if it's related to having eaten gluten or if I'm just experiencing the blood sugar issues that one can expect in the absense of having a real meal by mid afternoon.

[Joyous]

And I can't take my xanax because it's generic and has gluten in it!!!

[Joyous]

Actually, come to think of it, I also had a pretty big bowl of cottage cheese with peaches. I shouldn't be feeling this way based only on the amount of food I've had today. I wonder if eating gluten yesterday caused this?

[ravenwoodglass]

Actually, come to think of it, I also had a pretty big bowl of cottage cheese with peaches. I shouldn't be feeling this way based only on the amount of food I've had today. I wonder if eating gluten yesterday caused this?

Yes, gluten is a neurotoxin for many and can cause depression and anxiety issues. It will pass without the need for meds. Try and do something pleasant and relaxing and keep things low stress until it does.

To try and stave off BS issues you should try to eat at least a little bit and make sure you get some protein. Even a few gluten free nuts and a handful of raisens or a piece of fruit is better than nothing. In additon for some the longer you go without food the less hungrey you will be. Try to get down at least a bit every few hours even if you can't stomach a full meal.

[Joyous]

I'm sure the adderall doesn't help either. I'm looking forward to not taking it anymore, though I must say that the time I spent on a gluten free diet was actually easier than eating had been before then. Appetite was a little better, and, more importantly, it wasn't so stressful to decide what to eat.

[ravenwoodglass]

I'm sure the adderall doesn't help either. I'm looking forward to not taking it anymore, though I must say that the time I spent on a gluten free diet was actually easier than eating had been before then. Appetite was a little better, and, more importantly, it wasn't so stressful to decide what to eat.

I would look forward to not taking it also. How long have you been on it? It is an form of speed, in street lingo, and is quite addictive and has a lot of side effects. Be sure to check with your doctor when you decide to try life without it. You may need to taper off it and if you have been on it for a while your doctor would be the best one to guide you with the process. I do so wish doctors would suggest a gluten free diet before they put us on these things as that may have negated your need to even start it. Any bold is my addition and in the side effects section I have bolded the side effects that are also common celiac symptoms and may be blown off by your doctor as 'just side effects of the drug' so nothing important. I don't know what other meds you are on but even ascorbic acid (vitamin C) should not be taken or consumed while on this drug.

Dextroamphetamine

Brand Name: Dextrostat, Adderall, Desoxyn, Dexedrine

Side Effects of Dextroamphetamine:

Some common side effects reported with this medicine include:

Excessive restlessness,

overstimulation

Drowsiness,

headache,

ataxia,

false feeling of well-being,

feeling of unpleasantness,

vertigo,

changes in sex drive,

fatigue,

diplopia,

dizziness,

nausea,

vomiting,

allergic skin reactions,

edema,

fluid retention,

dry mouth

difficulty sleeping or drowsiness,

stomach pain, or

loss of appetite.

Warnings and precautions for Dextroamphetamine spansule:

Do not use in patients with a history of drug abuse.

Do not use during or within 14 days following the administration of MAO inhibitors; hypertensive crises may result. Advanced arteriosclerosis, symptomatic cardiovascular disease, moderate to severe hypertension, hyperthyroidism, known hypersensitivity or idiosyncrasy to the sympathomimetic amines, glaucoma and agitated states.

The combination of dextroamphetamine and amphetamine is an addictive drug. People often become dependent on dextroamphetamine and amphetamine after using it for long periods of time. To avoid this, keep all appointments with your doctor and use dextroamphetamine and amphetamine only as directed. Also, do not give your medicine to anyone else.

Tell your doctor and pharmacist what prescription and nonprescription drugs you are taking, especially ammonium chloride; ascorbic acid; glutamic acid; sodium bicarbonate; MAO inhibitors such as phenelzine (Nardil) or tranylcypromine (Parnate), even if you stopped taking them in the last 2 weeks; guanethidine (Ismelin); medications for depression such as amitriptyline (Elavil), clomipramine (Anafranil), desipramine (Norpramin), doxepin (Adapin, Sinequan), impramine (Tofranil), nortriptyline (Aventyl, Pamelor), protriptyline (Vivactil), and trimipramine (Surmontil); reserpine; medications for epilepsy such as ethosuximide (Zarontin), phenobarbital, and phenytoin (Dilantin); beta-blockers, calcium channel blockers, or other medications used to treat heart disease; diuretics (''water pills'') such as acetazolamide (Diamox); haloperidol (Haldol); chlorpromazine (Ormazine, Thorazine); medications for high blood pressure (''blood pressure pills''); antihistamines such as diphenhydramine (Benadryl), hydroxyzine (Atarax, Vistaril), and promethazine (Phenergan, Anergan, Phenazine); lithium (Lithobid, Eskalith); meperidine (Demerol); propoxyphene (Darvon, Darvon-N, Dolene); and herbal products or vitamins.The combination of dextroamphetamine and amphetamine affects the action of other medications, and many medications can affect the action of this medication. Tell your doctor and pharmacist everything you are taking.

Safety for use during pregnancy and lactation has not been established. Although CNS stimulants are seldom indicated after puberty, it should be borne in mind that Dexedrine should not be used during pregnancy or in women who may become pregnant.

Liver function tests should be performed prior to and periodically during therapy with Dexedrine. If you take this medicine in large doses for a long time, do not stop taking it without first checking with your doctor. Your doctor may want you to reduce gradually the amount you are taking before stopping completely.

Drug treatment is not indicated in all cases of ADD with hyperactivity and should be considered only in light of complete history and evaluation .

[Joyous]

Oh trust me, I know alllllllllllll about adderall (an amphetamine cocktail) as well as it's side effects...

I've done a lot of reading about it during the past almost four years (that's how long I've been on it). I'm on "the right" dosage now, but for a little while I was taking too much and there were some serious side effects that resulted. Overall though, my psychiatric and physical symptoms have been better since I've been taking it. The type of anxiety I was dealing with last night wasn't "typical" anxiety, nor was it the type of anxiety I experience if I take too much adderall in too short a period of time. It was different...

To be perfectly honest, the whole reason I sought a diagnosis of adult ADD (I was diagnosed with ADD as a kid but hadn't taken any medications for it for like 15 years) is because of low energy. (Not a wise idea, I know, but I was desperate.) Every other ADD symptom (every other symptom of any type, really) that I've ever had can also be explained by Celiac Disease.