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Test Results Were Negative But.....

Kathy'sUnicorns

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Kathy'sUnicorns Apprentice
Kathy'sUnicorns
Posted

I have been following the gluten free diet for 3 days now and have no pain and no bloating. I also feel more energetic. Could it possibly be an allergy without being Celiac? Anyone else have a negative blood test but did have Celiac?

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buffettbride Enthusiast
buffettbride
Posted

It happens ALL the time. As others will chime in I'm sure, many folks here had negative blood tests (notoriously unreliable) who are sensitive to gluten. It's usually referred to as a gluten sensitivity rather than an allergy.

The important thing is you feel better without eating gluten and many others here will encourage you to continue eating gluten-free as long as it makes you feel well.

Lisa Mentor
Lisa
Posted
I have been following the gluten free diet for 3 days now and have no pain and no bloating. I also feel more energetic. Could it possibly be an allergy without being Celiac? Anyone else have a negative blood test but did have Celiac?

You are quite lucky to have you symptoms turn around in such a short time. It takes some many months to feel a differences and many several years to completely heal.

You could be gluten sensitive or have an allergy (to include topical issues). I glad that you continue to feel better.

ravenwoodglass Mentor
ravenwoodglass
Posted
Anyone else have a negative blood test but did have Celiac?

Me, over and over and over and over. I like you had a real quick response GI wise, other stuff took longer to go away. Glad it is helping, that is what counts more than any bloodtest IMHO.

Aligray Apprentice
Aligray
Posted

I 2nd Buffetbride!

I had negative results but the gluten-free diet has changed everything!

I would encourage u to stay on the gluten-free diet! u will be more and more encouraged as u continue to feel better!

tuxedocat Apprentice
tuxedocat
Posted

I'm gluten intolerant but tested negative for celiac. My Nutrition teacher (I'm a pre-nursing student and this is a required class) informed me that many Celiacs test negative for a long time before testing positive... she is very well informed about Celiac and I'm just so amazed that my Nutrition instructor knows much more than any doctor I've ever had. I'm sorry I had to drop that class, and sorry that when I re-take it next semester it will have to be with a different professor (because she isn't offering the same time slot).

FootballFanatic Contributor
FootballFanatic
Posted

Everytime someone brings this up I think of that old joke..

Patient: "Doctor it hurts when I do this."

Doctor: "Don't do that..."

Who needs test results, if you realize that banging your head against the wall gives you a headache, you don't bang your head against the wall anymore, so apply that to your diet and if you response well to the change stick with the change. You don't have to listen to what the tests say.

:) Best of luck on the gluten-free diet!

EDIT: When reading this I think my words sound too condescending so I just wanted to clear up it's not supposed to sound that way. I am just passionate about if something makes you feel good, go for it. :)

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loco-ladi Contributor
loco-ladi
Posted

I am gluten free, no blood tests, no biopsy's

couldnt get my dr to listen to me, so to He** with them and here I am, not 100% but darn close to it!

went to the dr office the other day and ordered myself some tests to check my nutrient levels, oh yeah and pretty much told the dr whats what..... they are now SO on board even mentioned the infamous blood tests I said, shows how much you know, they will be negative now I have been gluten-free for to long.........

Its hard to train a dr now-a-days

babinsky Apprentice
babinsky
Posted

My doctor called Thurs. and told me they found celiac sprue after doing a biopsy and sent me Friday for the bloodwork.....I think this is backwards but whatever stops the pain! Can you have sprue without having the disease? I went shopping today and ended up in the grocery store for 2 hours......I think they were ready to hire me

little d Enthusiast
little d
Posted
I 2nd Buffetbride!

I had negative results but the gluten-free diet has changed everything!

I would encourage u to stay on the gluten-free diet! u will be more and more encouraged as u continue to feel better!

I'll 3rd that too. I can too eat gluten get a reaction weather it is the brain fog, or gastric symptoms and then eat gluten free clean myself up and feel better. I can usuallyl only tolerate just one or two meals before I really get the ugly stuff, I know that I am playing with fire and it is going to catch up to me one of these days but I am so glad that I am not totally sick. I was mad as h**l when all my results came back negative I had been on the gluten free diet for only 3 - 4 months when I got tested and it was enough to make even the scopes look clean, and My GI doc did say it just may be hidden in my intestines but if you have anything "I" would want to have IBS because we can control that with meds. I'm sorry I don't believe in controlling my body with meds unless it is very necessary. But yes my gluten free diet has changed everything in my life and I am so thankful to my sister who approached me on this. I have struggled with it for a long time not having an official diagnoses, but when my general practice doctor who knows nothing about the disease which he admitted that he did not and told me that if the diet helps regardless of what you have going on then keep up the diet. I guess that is all I needed and so I have tried to stay gluten free as much as I can, sometimes it is hard especaially when my husband wants to eat out on most weekends but I will order something like grilled chicken and veggies, baked potato if it is offered. He lets me usually choose the restraunt and I know which ones and what meals work for me.

donna

cyberprof Enthusiast
cyberprof
Posted
My doctor called Thurs. and told me they found celiac sprue after doing a biopsy and sent me Friday for the bloodwork.....I think this is backwards but whatever stops the pain! Can you have sprue without having the disease? I went shopping today and ended up in the grocery store for 2 hours......I think they were ready to hire me

Babinsky, sprue is celiac. Some doctors call it just "sprue" (because celiac sprue fits in the general category of sprue and also because "celiac" by itself has another different meaning in medical parlance without the word sprue attached).

So, YES, you do have celiac! I had the same diagnosis pattern- the biopsy first because they were looking for answers. The blood test later was negative (I was still on gluten) but it doesn't matter because the positive biopsy overrides the negative blood test.

Good luck going gluten free and be sure to post if you have questions.

babinsky Apprentice
babinsky
Posted

Thank you cyberprof....I started the diet just to be safe as soon as the bloodwork was finished. I am just learning about this...had never really heard of it until Thus. As much of a pain as it seems to be right now I am sure like everything else I will get used to it......I am Italian so right now I am going through a mourning process....LOL. This is certainly better than everyone including me thinking all of this pain was in my head...at least now there may be a light at the end of the tunnel.

jdp364 Newbie
jdp364
Posted

I'm in a similar boat to Kathy's Unicorns...blood test was "ambiguous" for celiac due to low total IgA, but biopsy was negative for celiac. Yet, if I do not eat gluten free, I feel sluggish and have near-constant gastric issues. I seem to have a form of gluten intolerance rather than celiac, since my symptoms aren't quite as extreme as those of most people here.

gfpaperdoll Rookie
gfpaperdoll
Posted

Note to Donna: You have to be gluten free for 5 years before your chances of getting cancer return to the lower percentages of the general population... everytime you eat gluten it just restarts the calendar...

kbtoyssni Contributor
kbtoyssni
Posted
I have been following the gluten free diet for 3 days now and have no pain and no bloating. I also feel more energetic. Could it possibly be an allergy without being Celiac? Anyone else have a negative blood test but did have Celiac?

I think of it as a negative blood test means you don't have as much damage and antibodies to gluten yet to get a positive. This is not a bad thing. Why wait for your body to have more damage just to get a positive test when you can start healing now?

Kathy'sUnicorns Apprentice
Kathy'sUnicorns
Posted
  • Author

Thank-you all!!!!!! I was talking with my mom (who is the nurse for the other doctor in the practice I go to for primary care) and she and my primary doctor said that if it keeps the pain and other stuff away then follow it. I haven't felt this good in I don't know how long.

DownWithGluten Explorer
DownWithGluten
Posted

Yo ho ho! For sure, that's the same as me. I'd been having digestive pain/issues for about as long as I can remember...worsening more rapidly in the last 6 or so years. Doctors tried zelenorm, said I had IBS, etc. I had barium tests, ovary sonograms, blood tests, and other fun stuff. I tested NEGATIVE "as far as we can tell" (so said the report) for Celiac. I was at a point of despair this last December. Thinking, literally, "I don't see how I am going to want to stay alive much longer if I'm going to keep having to go through all this chronic digestive pain/drama" etc. Even the foods I'd rely on for "comfort", like bread and pasta (oh the irony) were making me feel bad. I used to think it was greasy stuff. So I decided, as a last resort, to try the gluten-free diet. I didn't get the biopsy because I was at the point that even if THAT came back negative, I was still going to try the diet. So might as well spare the uncomfortable procedure since I was just going to do it anyway.

So this January, I started the diet. And guess what! Almost all of the pain and drama went away within weeks. Something that amazed me right off. On January 8 is when I started. That next week, I was under a TON of stress. Constant adrenaline dripping into my stomach. I thought FOR SURE my digestive system was going to react horribly, as it always used to. But it DIDN'T. That AMAZED me. That was my first HUGE indication that the diet was helping drastically.

So yeah, negative tests - yet the gluten-free diet has basically solved all the digestive problems. I was bloated/constipated somewhat near the beginning after doing it, but I began to catch on what to eat. It's now October and...well yeah. The diet is pretty inconvenient/rough - but when I just think back to how HORRIBLE and despairing things used to be for me, and how that is all GONE now - it's worth it. Obviously the most desirable thing would be not to have any problems at all, but hey. I'll take what I can get and I'm glad to have found something.

So, best of luck with it. I hope it continues to work for you as it has for me.

hathor Contributor
hathor
Posted
I am Italian so right now I am going through a mourning process....LOL. This is certainly better than everyone including me thinking all of this pain was in my head...at least now there may be a light at the end of the tunnel.

I think everyone goes through a mourning process. I tried to be big and brave for a few days, then finally had my personal pity party for a few days and moved on. There are plenty of things I can still eat (even with other intolerances and being vegetarian) and there are many worse problems. But you still have to allow yourself to grieve for those foods you can't eat or drink. (I just found out a week or so ago that my yeast intolerance means I shouldn't be having wine. I had my grief period for that, you can bet!)

Fortunately, there is gluten-free pasta out there. (I haven't figured out gnocchi yet. I've seen gluten-free recipes for it, but they have egg, which I can't have. Grrr) Risotto is gluten-free. My understanding that if one travels in Italy you can find a high level of awareness of celiac and most places have gluten-free options. You should be able to figure out how to have all your favorites, except for Italian bread. I don't know what to tell you about that one :( I wish the Italian restaurants in the US were as accommodating as those in Italy.

It is nice to know what your problem is and that you can treat it by something simple and painless like changing your diet. I mean simple and painless as opposed to something where one needs prescription drugs, surgery, etc., etc.

babinsky Apprentice
babinsky
Posted

I would love to have a good gnocchi receipe....that could ease a little of my anger>>>>>I can still drink wine so I guess I will be happy for the things I can do!

JNBunnie1 Community Regular
JNBunnie1
Posted
I would love to have a good gnocchi receipe....that could ease a little of my anger>>>>>I can still drink wine so I guess I will be happy for the things I can do!

Babinsky- give it a couple weeks, then try Tinkyada pasta. It's made from rice and it's the general favorite on the board, I've fed it to people without them noticing the difference. There are also gluten-free breadcrumbs available.

Jesse E Rookie
Jesse E
Posted
Note to Donna: You have to be gluten free for 5 years before your chances of getting cancer return to the lower percentages of the general population... everytime you eat gluten it just restarts the calendar...

Do you have a source for this?

hathor Contributor
hathor
Posted
I would love to have a good gnocchi receipe....that could ease a little of my anger>>>>>I can still drink wine so I guess I will be happy for the things I can do!

If you google on gluten free gnocchi, you can find recipes. I just haven't found an egg-free one.

Yeah, wine was my ace in the hole and now it's gone :( I have heard of sensitivities going away after some time so I'll keep hoping. Maybe my experiment of going without wine will be a big flop.

Meanwhile, I'm exploring the joys of vodka and tequila :lol:

babinsky Apprentice
babinsky
Posted

yum...lemondrop martini's

JNBunnie1 Community Regular
JNBunnie1
Posted
If you google on gluten free gnocchi, you can find recipes. I just haven't found an egg-free one.

Yeah, wine was my ace in the hole and now it's gone :( I have heard of sensitivities going away after some time so I'll keep hoping. Maybe my experiment of going without wine will be a big flop.

Meanwhile, I'm exploring the joys of vodka and tequila :lol:

Does hard cider have yeast in it?

hathor Contributor
hathor
Posted
Does hard cider have yeast in it?

According to two lists I've seen, yes.

Open Original Shared Link

Open Original Shared Link

(These confuse me about rum and scotch, both of which I like, too :( )

This description says that the yeast in beer, wine, and cider is "negligible":

Open Original Shared Link

This description makes it seem that no alcoholic beverage is completely free of yeast, but some are better than others:

Open Original Shared Link

I try to do research, but what I find is confusion. I even found a site that acknowledges that a yeast-free diet is one of the most confusing to implement because of the controversies. Open Original Shared Link

Ya think?

Now for my question, this one for babinsky -- have you run across flavored vodkas that contain gluten? I just searched and it looks like Absolut's line is OK, but I don't know about anyone else's. Before I start ordering flavored stuff, I want to make sure.

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