Negative And Positive Tests

[mizryluvscompany]

I am new here and have been trying to find some guidance about my ongoing digestive problems.

I am male and about 3 years ago I bean to experience recurring bouts of nausea. I never got sick but felt very queasy and this was usually accompanied by fatigue, gas/belching, weakness, brain fog, etc. I described it once as feeling like I'd been poisoned. The episode would last a few days and then I would wake up one morning and feel fine.

This kept happening and episodes became longer. After a lot of testing through physician and gastroenterologist, a HITA scan indicated borderline gall bladder function. I was feeling so miserable that I had it removed. No improvement.

What I began to realize that I was pretty much chronically constipated, with anywhere from 5-7 days between activity. GI doc put me on high fiber diet but problems persisted. I was also tested for Celiac disease and the result was negative. It was really taking a toll so I finally went to a chiropractor specializing in diet and nutrition this past August.

The chiro had me provide saliva and stool samples and sent for panel of tests to Diagnos-techs, a lab in Washington state. In the meantime I went on a liver cleanse diet which had me feeling great at one point and terrible at others. The test results came back with the following results:

Gliadin Ab, SIgA (Saliva) - 65 - Positive (Borderline: 13-15 U/ml) (Positive: >15 U/ml)

Milk (Casein) Ab, SIgA (Saliva) - Positive

The chiro said it was the highest gliadin reading he'd ever seen. Since then I have tried to eat gluten-free and I have been off and on with dairy products. I have suddenly began to have attacks of diarrhea within a few hours of eating any baked item. This never happened before and now I have diarrhea almost weekly instead of the chronic constipation from before.

Someone told me that my results from the tests seemed exaggerrated and they would take with a grain of salt.

Since August I have lost 25+ pounds. From 178 to 153. I feel terrible most of the time. I stopped seeing the chiro because I just couldn't get comfortable with things like "applied kinesiology" and the addition of a new supplement every week. My physician was uncomfortable with the weight loss and advised keeping some dairy for protein. Since I had eliminated so much junk from my diet I am having real difficulty gaining any weight. And the bouts of diarrhea sure don't help. They'll be nothing left of me if I don't get some more calories to turn to fat and stick to my bones.

With the exception of the blatant "eat cake, get diarrhea" example, I really haven't been able to associate any patterns with what I eat and don't eat. Last week I felt great and when I feel great I get my appetite back and then I want to eat. I still avoid gluten but wonder if I'm being strict enough. Sometimes I eat dairy with no problems and other times there are problems but I'm really not sure that they are related.

So, bottom line, I tested negative for Celiac, positive for gluten intolerance and positive for casein intolerance. I am feeling undernourished and have trouble following a rigid diet though I am trying.

Should I be re-tested by another lab for confirmation? If so, who? What type of tests?

Am I being too casual about the diet? Can you really stay healthy and totally avoid gluten and dairy?

Is there a really good menu planning guide that lays out a couple/few weeks of meals that totally avoid gluten and dairy?

And if I go full tilt on the gluten/dairy elimination and don't experience any relief, any recommendations for next steps?

This is really taking a toll physically and emotionally and I am not sure what the best course of action is to nail this thing down. I feel awful most of the time anymore and am worse off now that I was when this all started 3 years ago.

Thanks in advance for any and all feedback.

[mushroom]

Hi,and welcome to the forum.

I am not going to give you any supportive "mizry", but I am going to tell you that you can *do* this. A diet without dairy is not an unhealthy diet. Many folks believe we should not eat dairy anyway. Whilst I do, you will find many people on this forum who are both gluten and dairy free. While it seems daunting at the start, it just means you have to be a little more creative.

First off, there are good milk substitutes. Soy milk,and for those who don't tolerate soy, there is also rice, almond and hemp milks. Be careful of the Rice Dream milk because it is processed with barley and lots of folks react to it. There are also cheese substitutes, coconut and hemp milk ice creams (as well as soy). so no need to feel deprived.

Secondly, you must become very strict with yourself a very good label reader and learn to track down gluten and casein (dairy) in all its hidden forms--and there are a multitude of them. You must be strict in avoiding toiletries with gluten in them (don't forget the toothpaste) and any medications or supplements you take must be screened for gluten. If you can't determine from the package or can't find out from the manufacturer, don't do it. Yes, you must be very strict, because even a trace amount of gluten can set off a reaction. This is not something you can do in a slapdash/near enough type way. You need to purchase a new toaster, throw away any scratched teflon pans, buy new wooden utensils, cutting board, etc. Clean the gluten out of your pantry entirely! If you are living in a house with other gluten eaters you will need to set aside gluten free zones in your refrigerator and pantry and on the counter which MUST be respected.

You are probably reacting to baked goods because your gut is not used to the gluten free grains which can be hard to digest until your gut has healed. You must remember that the healing process will take a while, depending on the amount of damage you have. It is best to start out with easy to digest whole foods like meat, fish, rice, fruits and veggies, eggs (plenty of protein included in that list!) and give yourself a chance to heal before you get more exotic. I know it sounds boring, but is feeling good boring?? I don't think so, that is the aim here. The reason you continue to lose weight is your body is not absorbing the nutrients you are ingesting, and you need to reverse this process. You are probably also deficient in essential nutrients and should have your levels of iron, vitamin B12, D, folate (this is a minimal list) tested. Supplementing any deficiencies can make an enormous difference to your energy levels.

You need to give this a good two-month trial. You may well be astounded with the results. If you are still no better at the end of this time you can look at other options but you need to give the diet a good solid trial first.

[Ahorsesoul]

Yes, you are being too casual with your diet. You tested positive for gluten intolerance and casein, avoid them in all forms.

You can have a healthy diet without the gluten and casein. And you will feel so much better. Are you and your healthy with the effort?

[ciavyn]

I'm with the rest - it's good to give it a shot. I am not able to afford the tests, nor am I willing to go back to eating gluten to take the tests. I did a diet trial, and thus far, it's been phenomenal. I'm gluten, diary, and nut free, and I assure you - it's easy when you look at the comparison: feeling like crap. Give it an honest go and see if you improve.

Mushroom - thanks for the heads-up on Rice Dream. I felt great on Almond breeze (despite no other nuts in my diet) but have felt wonky on the rice dream, and figured it was in my head. No wonder I've trying to figure out what I ate - all natural, whole foods all week! - that is bothering me. I appreciate the clue.

[mizryluvscompany]

Well I really do appreciate the responses. I have felt so bad for so long and been given so much contradictory feedback I didn't know what to do.

I guess the only real way to know is to take the plunge and eliminate gluten and dairy completely and see what happens. I just found it really challenging the first time I tried and was still feeling bad even when not including these items. Plus the weight loss was/is scary. Did I probably not hang in long enough?

I guess one of the questions for me is, how confident can I be in the test results? Is it typical to get another test just to confirm? Any recommendations on a really reliable lab for this?

Thanks again.

[mushroom]

My results from Diagnos-Techs were pretty reliable. Your lactose intolerance may only be temporary until your villi heal and start producing the enzyme lactase to digest the lactose. My results from Diagnos-Techs said casein, but it was actually only the lactose I was having problems with, and 18 months later I am tolerating some lactose products in small amounts and I could always handle yogurt and cheese. I haven't gone for ice cream yet You will have to assume for now that it is casein, and then later on you can challenge with some yogurt and cheddar cheese and see if it was only the lactose.

Yes, it is a challenging diet to get used to, but everything worth achieving takes some effort (philosophical thought for the day). Quitting smoking was extremely challenging but I would not be here today if I hadn't done it.

Yes, I believe that you did not give it long enough or take it seriously enough. Think of it this way: if it is gluten and casein that is at the root of your problems, every time you ingest some of either you are harming yourself, setting up an autoimmune response in your body and perhaps triggering other worse autoimmune illnesses if you keep it up. If that doesn't give you the motivation I don't know what will. And no, my rheumatoid arthritis did not get better on a gluten free diet; it is something I will have to treat for the rest of my life. I did not figure it out soon enough.

[nora-n]

The usual medical celiac test is the tissue transglutaminase test, but the antigliadin test is a good old test that was used before for a long time.

I guess you had the ttg test before and it was negative. Its cutoff is set high to not to get negative biopsies whenever the ttg test is positive. That way also a lot of celiacs will get false negative tests.

The antigliadin test is known to show up in early celiac. And, I guess it might be designed to pick up early celiac with that lab.

You can read more about the significance of the antigliadin test if you google ford gluten.

The reason you react violently to gluten and milk now, is because you are mostly gluten-free and then whenever you eat gluten, there are something called freshly activated T cells. So you get a more severe reaction.

This just confirms you should go absolutely strict on the diet.

Do you by any chance have lyme disease or chronic fatigue? those people usualy have to go gluten-and milk free, and treat various infections, viruses and parasites. The chiro that uses kinesiology should test for those. On the lyme forums the peole that come back and say they are well or on teh way to getting heales, say probiotics and parasites and gut and so on are most important, in hindsight. Check the other food intolerancs folder here for more on the subject.

[mizryluvscompany]

Thanks Nora. I actually requested info from the Gastro doc that ordered the blood tests. The tests were done at Quest Diagnostics in Virginia. The results as follows:

- Endomysial IgA Ab Scr - Negative

- Endomysial IgA Add'l - not indicated

- tTG IgA Antibody - <3 (Ref Ranges <5 U/ml)

Not sure how this relates to the earlier test done by chiro. He also did a full panel through Diagnos-techs that resulted in negative for parasites and other things related to gut.

I have to tell you, I have been seriously avoiding anything dairy or gluten for the past few days and I still feel absolutely horrible. Something has truly "infected" me for lack of better reference and I seem to be getting worse instead of better. It seems like everything that I put in my stomach makes me feel bad. Diarrhea seems to have calmed down some but this has been going on for three years in moderation and for 3 months with no let up.

Like I said, I've lost 26 pounds and counting and when I manage to gain some back I'll get the big D and lose it again. i have seriously loaded up on dairy and gluten free products and that's all I eat.

I am seriously lost.

[maile]

Like I said, I've lost 26 pounds and counting and when I manage to gain some back I'll get the big D and lose it again. i have seriously loaded up on dairy and gluten free products and that's all I eat.

I am seriously lost.

Just a suggestion but it might be worthwhile to go simple for a couple of weeks or so to let your gut calm down. by simple I mean protein, veggies, fruit and fat, starch in the form of rice or tapioca/manioc (if you can handle it) and avoid anything processed.

Many of us find we have additional intolerances in the beginning because the gut is so compromised. The common ones are soy, dairy (which you already know) nightshades (potato, tomato, eggplant and peppers), corn and nuts and they end up in a fair amount of processed foods.

[nora-n]

It is possible to have other issues like sibo.

There was someone here where it turned out the problem was bacteria overgrowth.

Also, it is possible to have a bad case of candida, even on top of celiac, or without celiac.

cfs patients often have enteroviruses.

They also may have fructose or other sugar malabsorption.

[mizryluvscompany]

Thanks for the feedback, nora_n. One question I have is that it seems like there are so many different possibilities, how do you ever, ever nail down the culprit?

I decided about 10 days ago to be very rigid with avoiding gluten and dairy. Since then I have continued to have problems even missing a traditional Christmas Eve event for the first time in 20 years. Today, I started out to work and had an attack of diarrhea while driving to work. Had to pull into a church to get to a bathroom. The whole drive is less than 10 minutes and I couldn't even make that.

Yesterday, I made an appointment at Johns Hopkins Hospital. It is a little over an hour from my house. I really need help and don't know what else to do. I am so drained and tired and nauseous that I'm not really functioning very well at all.

My great fear here is that no one will be able to tell me what is wrong and I will be this way for the rest of my life. I feel weak and sick nearly every day and I don't know how I'll be able to be productive and support my family.

I have a whole new appreciation and empathy for anyone with a chronic illness and daily responsibilities.

[nora-n]

I heard Mayo is not so good with celaic or gluten sensitivity, dunno about John Hopkins.

Have you read around at Dr. Lewey's website? www.thefooddoc.com

There is more than just straight celiac, gluten sensitivity and bacteria overgrowth etc are possible too, and the other gut diseases.

In the case of mb. Crohn and ulcerative colitis, lots of patients have reported dramatic results on the Specific Carbohydrate Diet. This is like gluten free but even stricter.

Just in case they come up with something like that and give you potent steroids etc. SCD diet works better than those medicines.

[txplowgirl]

Hi Mizry, I have heard the SCD diet works wonders. That seems to be for a lot of members here who still have issues after going gluten free and they have found a lot of relief. Just my thought. Good luck and I hope you get to feeling better.

[nora-n]

there is a long thread on the SCD diet here: https://www.celiac.com/gluten-free/index.php?showforum=51