Another W/negative Test Results

[shirleyujest]

Well color me confused... except I read some of the recent posts by others who tested negative for antibodies. I found the slide show on celiac vs. non celiac gluten intolerance, and it made sense. It looks like I have intolerance. That would seem right because I can eat a few croutons on a salad, no problem. But a sandwich or a pasta dinner + garlic bread = lethargy, changes in sensations in my hands, etc.

So I guess I need to cut way back, but if I indulge a teeny bit on occasion it's okay.

Anyone check out that book "Better without Wheat"? Is it good or would you recommend another?

Thanks! Hope I can still hang out here. This morning I used tortilla chips w/my egg-salsa scramble and enjoyed it instead of the usual toast.

I do feel like I'm starving without bread though!

[lizard00]

Sure you can still hang out here!!

Did you actually get your test results? I had negative blood work, too, but I cannot tolerate gluten in any amount. My doctor diagnosed me celiac based on a few different things. And did you go gluten-free before your blood testing?

The testing for celiac is not perfect, so, testing can rule it in, not rule it out conclusively.

[shirleyujest]

Sure you can still hang out here!!

Did you actually get your test results? I had negative blood work, too, but I cannot tolerate gluten in any amount. My doctor diagnosed me celiac based on a few different things. And did you go gluten-free before your blood testing?

The testing for celiac is not perfect, so, testing can rule it in, not rule it out conclusively.

Yes, my doctor's assistant called and said the blood results were negative. I don't especially want to get a biopsy as I don't want to eat more. ( except for croutons

Also I was dx'd w/systemic lupus, fibromyalgia, and Sjogren's a few years ago. Some of the symptoms are explained by these autoimmune problems. Some of the symptoms pre-date the rheumatological disorders by several years, like loss of sensation in my hands and reflux (tho the reflex got much worse w/the SLE). I do have ataxia and still suffer enough fatigue even tho the SLE is well managed, I'll try anything if there's a chance I can build up my stamina. And I've been concerned about malabsorption/nutritional deficiencies and a few months ago I was found to be anemic and insufficient in Vit. D.

It's all confusing.

On what basis has your doctor dx'd you w/Celiac?

[elye]

My husband had a "negative" celiac blood panel, a "negative" biopsy, and then a high positive stool test. He gave up gluten completely, and his joint pain, gas and fatigue vanished within a month.

I have always believed that the only truly accurate diagnostic test is dietary response. It would be very interesting, and perhaps quite telling, if you went completely gluten-free for six months - - your ataxia, fibromyalgia and lupus symptoms may go away. Welcome to the board!

[psawyer]

Shirleyujest, you mentioned croutons. This is from another thread, but you can have great gluten-free croutons.

The crouton story begins a while back. We bought some pre-made croutons by the Gluten Free Pantry in October and liked them, but felt that they were a bit on the expensive side.

We have been buying Glutino products at a large chain grocery store for a couple of years (we used to get them online). We don't like that store for most things, and only buy things there that we can't get at our usual store. The usual, preferred store is part of a small chain operating just in the Toronto area.

Recently, our regular store began to carry some Glutino and Gluten Free Pantry items. So far it is just those that can be shelved without refrigeration. They have the spaghetti for less that the big chain. A couple of weeks ago we bought Gluten Free Pantry French bread & pizza mix. We used our bread machine to bake a 2 lb loaf of French bread.

We saved the top and bottom of the loaf, while eating the rest of it.

Today, we used the ends of the loaf for croutons. We cut the week-old bread into cubes about 3/4 of an inch on each side. We had lots of pieces. We used 3 tbps (45 ml) of extra virgin olive oil, six crushed garlic cloves, and some (unmeasured) dehydrated basil and oregano. It was about twice as much basil as oregano.

We mixed the garlic and oil and tossed them with the bread and herbs in a mixing bowl.

Then we spread it out on a baking sheet, one layer only, and baked for 15 minutes at 375F. Twice, at 5 and 10 minutes, we took them out and used a spatula to toss them around to bake evenly.

Tonight we started our meal with a salad that included these croutons. They are crunchy, and very palatable. They were not as garlicky as we had hoped. We thought we had a garlic press, but could not find it when the chips were down, so the garlic was not as well mashed as it could have been. Tomorrow we are going shopping for a proper garlic press.

They were outstanding, and we have enough left for several enjoyable salads with gluten-, soy-, and dairy-free croutons. They contain rice, corn and potato. Click here to see the croutons.

My own diagnosis was by positive biopsy. Blood testing was relatively new at the time and it was not done on me.

[ravenwoodglass]

My husband had a "negative" celiac blood panel, a "negative" biopsy, and then a high positive stool test. He gave up gluten completely, and his joint pain, gas and fatigue vanished within a month.

I have always believed that the only truly accurate diagnostic test is dietary response. It would be very interesting, and perhaps quite telling, if you went completely gluten-free for six months - - your ataxia, fibromyalgia and lupus symptoms may go away. Welcome to the board!

I am also a blood test negative celiac. The advice given here was excellent. You can see the effect being strictly gluten free has had for me and the related disorders in my signature. I hope you take the advice and give a strict dietary trial a go. You may be surprised how many of your problems resolve.

[shirleyujest]

Well, you all make a lot of sense, and are kind to boot.

Emily, I like your 11-year-old son's initiative.

PS, the croutons do look good. I also have a garlic press, and if I lost it I'd run out right away and replace it.

I've picked up the gluten-free items, there are so many available, so it makes sense to just go with it and see what happens.

[elye]

I've picked up the gluten-free items, there are so many available, so it makes sense to just go with it and see what happens.

Fantastic! Can't wait to hear how things go - - keep us posted!

[lizard00]

I was diagnosed by my genetic risk factor (I carry 2 copies of the gene associated with celiac), and my almost complete resolution of symptoms going gluten-free. I'm also IgA deficient, which is why I asked about your blood test results, because the tests that most doctors run are IgA based and do not always include the IgG counterpart. Incidentally, the initial PA who ran my results signed off on the deficiency as nothing to even worry about, so, it's a good idea to get your results in your hand, just in case.

At the time I saw him, I was gluten-free 6 months, and was doing remarkably better. I didn't want to do the challenge for the sake of a biopsy, (simply because I couldn't go through what I had been through, nor could I put my family through it again) so he settled on getting my genetic results. He basically told me that using the basic celiac panel that most doctors run, I would never show up positive, no matter how sick I was, because of the IgA deficiency.

All this to say: Blood work isn't always conclusive. If you believe gluten is the problem, like everyone has said, just go gluten-free. I felt the same way in the beginning, "I can cheat here or there, I can have pizza, and not worry..." but the better I felt from being completely gluten-free, the less I started thinking like that. Now I am glad that I didn't follow that line of thinking, because I never would've made any progress.

I hope you see some great results!

[RollingAlong]

Perhaps you're thinking of "Healthier without Wheat"? It is an excellent book, IMO,

He would advise the diet be just as strict for gluten intolerance as celiacs.

Good luck getting rid of or ameliorating all of your health issues!