Just Had Blood Tests Done...Negative Results, But....

[capit]

Hi!

Thank goodness for this board. My nurse practitioner suggested that I find an online forum to help me through this process.

Is it possible to still have some sort of wheat/gluten intolerance, even with negative antibody test results? And if so, if it's an allergy or something and not celiac, what do I call it? I feel kind of weird insisting that I not eat wheat, and I feel like I need some sort of name or something to make it sound official. 'Wheat sensitivity', does that work?

I've had gut issues on and off for 8-9 years, was on Bentyl for a while, iron supplements for eons, have had lower right quadrant pain come and go, etc, etc--things were a lot better while I was in Asia, and a lot worse when I was baking and eating a lot of that in the States, so that made me suspect wheat. I mentioned it to my nurse practitioner and she told me to go off and then on wheat, and keep a diary. After a couple of weeks off wheat, I noticed an improvement. Less fatigue, less toilet paper . I went back on wheat and the symptoms returned. I got a referral to a GI doctor and I ate wheat every day for at least three months before the blood tests and it was getting horrible. I got joint and muscle pain, and I was getting pretty stupid. The wrong words were coming out of my mouth, I was drowsy a lot, I couldn't memorize or remember as well....it was pretty nasty. Working out dwindled to almost nothing because I was getting night sweats after 'hard workouts' which were a fraction of what I could do before.

The GI doc told me that the blood tests were negative and that was that. No further testing required and he sent me away. I went off wheat again because that had made me feel better before. And I'm feeling better. The pain is going away, I'm getting stronger, and my mood has improved dramatically. I was so glum and groggy before.

Did the follow up with my nurse practitioner, and she explained that the biopsy was the gold standard and the blood test wasn't 100% accurate. And then she said that since I feel better without wheat, and that would be the solution at any rate, I should continue avoiding it and see her again in two months.

So here I am, reading labels and finding new recipes and such, and reading the wealth of info on this site. Any other advice would be appreciated! I kind of feel like I'm in limbo. Anyone else in this limbo? LOL

Edit--sorry for the double post! :blush:

[mushroom]

Hi!

Thank goodness for this board. My nurse practitioner suggested that I find an online forum to help me through this process.

Is it possible to still have some sort of wheat/gluten intolerance, even with negative antibody test results? And if so, if it's an allergy or something and not celiac, what do I call it? I feel kind of weird insisting that I not eat wheat, and I feel like I need some sort of name or something to make it sound official. 'Wheat sensitivity', does that work?

I've had gut issues on and off for 8-9 years, was on Bentyl for a while, iron supplements for eons, have had lower right quadrant pain come and go, etc, etc--things were a lot better while I was in Asia, and a lot worse when I was baking and eating a lot of that in the States, so that made me suspect wheat. I mentioned it to my nurse practitioner and she told me to go off and then on wheat, and keep a diary. After a couple of weeks off wheat, I noticed an improvement. Less fatigue, less toilet paper . I went back on wheat and the symptoms returned. I got a referral to a GI doctor and I ate wheat every day for at least three months before the blood tests and it was getting horrible. I got joint and muscle pain, and I was getting pretty stupid. The wrong words were coming out of my mouth, I was drowsy a lot, I couldn't memorize or remember as well....it was pretty nasty. Working out dwindled to almost nothing because I was getting night sweats after 'hard workouts' which were a fraction of what I could do before.

The GI doc told me that the blood tests were negative and that was that. No further testing required and he sent me away. I went off wheat again because that had made me feel better before. And I'm feeling better. The pain is going away, I'm getting stronger, and my mood has improved dramatically. I was so glum and groggy before.

Did the follow up with my nurse practitioner, and she explained that the biopsy was the gold standard and the blood test wasn't 100% accurate. And then she said that since I feel better without wheat, and that would be the solution at any rate, I should continue avoiding it and see her again in two months.

So here I am, reading labels and finding new recipes and such, and reading the wealth of info on this site. Any other advice would be appreciated! I kind of feel like I'm in limbo. Anyone else in this limbo? LOL

Edit--sorry for the double post! :blush:

Hello, and welcome to the board.

Don't feel alone and in limbo--you are amongst friends of like kind here.

The answer to your negative blood work could go two ways, which both lead you down the gluten free path. The first is that it was a false negative, which is not at all uncommon. The second is that you are gluten intolerant/sensitive, but non-celiac, which is very common. Dr. Rodney Ford estimates that up to 40% of the population is gluten intolerant to some degree, and that only 10% of those people will test positive to celiac. That does not make your symptoms any less real or less severe than those of celiacs--it just means you didn't study hard enough for the test (just kidding) Some believe gluten intolerance is just early celiac, not yet fulll-blown, while other researchers are finding that just as there are genes associated with celiac disease, there are also genes associated with gluten intolerance/sensitivity.

As for what to call it, that is your choice. Many people, when describing their needs at restaurants, etc., refer to themselves as celiacs for convenience because it is becoming a well-recognized term and requires less explanation than gluten intolerance. I personally have not had any testing done (couldn't find anyone who offered it) so don't know which I am. I will call myself celiac when it facilitates social interaction, gluten intolerant on other occasions.

Some doctors actually believe that if you don't have diagnosable celiac you don't have to worry about gluten, but here, we know better. You have to be just as strict as if you were celiac because the gluten makes you feel just as bad and in many cases does just as much damage, as you found out with your joint pain, brain fog, night sweats and fatigue.

So anyway, again, welcome to our group. You will find a wealth of information here as well as excellent recipes and cooking tips, and a bunch of folks willing to answer any question that pops into your head. (Of course it helps to google the board and see if it has been asked before, but sometimes we do get new ones, as you will see from the multitudes of threads )

Happy reading and gluten free eating.

[capit]

Thank you for the reply! Reading it made me feel so much better and you've answered some questions. I'll figure out what nomenclature works best for me. On the one hand, I hesitate to call myself a celiac because it hasn't been formally declared or whatever (maybe because this is still new, I'm feeling sensitive about it, lol); on the other, I want people to understand that it's more than me trying to be difficult or just not liking wheat. 'Gluten intolerant' sounds good, though, thanks! I feel sort of awkward about this because I'm also mildly allergic to ground pepper; my husband and immediate family are supportive (some of them have other dietary intolerances so they understand), but I've had a couple of issues with the inlaws over the pepper thing. Going off wheat will be an added wrinkle. lol

I'm going to look up 'gluten intolerance' but it's helpful to read that the solution is the same: staying off wheat.

Thanks so much!

[GFinDC]

People use the term NCGI (non-celiac gluten intolerance) sometimes also.

[laurie9141]

Thank you for the reply! Reading it made me feel so much better and you've answered some questions. I'll figure out what nomenclature works best for me. On the one hand, I hesitate to call myself a celiac because it hasn't been formally declared or whatever (maybe because this is still new, I'm feeling sensitive about it, lol); on the other, I want people to understand that it's more than me trying to be difficult or just not liking wheat. 'Gluten intolerant' sounds good, though, thanks! I feel sort of awkward about this because I'm also mildly allergic to ground pepper; my husband and immediate family are supportive (some of them have other dietary intolerances so they understand), but I've had a couple of issues with the inlaws over the pepper thing. Going off wheat will be an added wrinkle. lol

I'm going to look up 'gluten intolerance' but it's helpful to read that the solution is the same: staying off wheat.

Thanks so much!

[laurie9141]

Thank you for the reply! Reading it made me feel so much better and you've answered some questions. I'll figure out what nomenclature works best for me. On the one hand, I hesitate to call myself a celiac because it hasn't been formally declared or whatever (maybe because this is still new, I'm feeling sensitive about it, lol); on the other, I want people to understand that it's more than me trying to be difficult or just not liking wheat. 'Gluten intolerant' sounds good, though, thanks! I feel sort of awkward about this because I'm also mildly allergic to ground pepper; my husband and immediate family are supportive (some of them have other dietary intolerances so they understand), but I've had a couple of issues with the inlaws over the pepper thing. Going off wheat will be an added wrinkle. lol

I'm going to look up 'gluten intolerance' but it's helpful to read that the solution is the same: staying off wheat.

Thanks so much!

Hi. years ago b4 I knew anything about gluten had horrible abdominal pain and diarrhea felt horrible too. I found it was from "bagged" lettuce any fake thing on asalad bar and I would be amess! In addition found out after we moved from our rental to this house, that our water softener system had changed... NEVER had to take the meds like I did b4... its the magnesium salts they used in the red out to bind w the the iron in the water... have nuthin like that unless I eat fake salad... I always ask when I go to retaurants if they cut it up there or get their salad in a bag... huge dif!@!could be both for you.. go down south on vaca where the ground is red and cannot drink the water... have to get bottled no questran no bentyl nuthin... we use culligan softner salt w no problems good luck

[nora-n]

it cans till be ordinary celiac, since they know that about 20% with total villous atrophy have negative blood tests.

Even more with partial /patchy celiac lesions have negative blood tests.

and, if they ordered the wrong tests they can be negative.

Like only ordereing the IgA type tests, because lots of celiacs are IgA deficient...that way the tests are not valid.

And, the time off gluten might have botched the subesquent testing, as we know that three months may not be enough time back on gluten.

With celiac kids (who had to go back on gluten to get the official diagnosis not so many years ago) it took anywhere from 6 weeks to 72 months back on gluten.

[capit]

it cans till be ordinary celiac, since they know that about 20% with total villous atrophy have negative blood tests.

Even more with partial /patchy celiac lesions have negative blood tests.

and, if they ordered the wrong tests they can be negative.

Like only ordereing the IgA type tests, because lots of celiacs are IgA deficient...that way the tests are not valid.

And, the time off gluten might have botched the subesquent testing, as we know that three months may not be enough time back on gluten.

With celiac kids (who had to go back on gluten to get the official diagnosis not so many years ago) it took anywhere from 6 weeks to 72 months back on gluten.

Wow, that's interesting. I had no idea that it took that long on gluten to get a good reading. I had been eating it before the gluten-free trial before the three months on gluten, but not regularly. Wheat things made me drowsy, and after a few days of eating those, I'd lose my appetite and kind of float along on fluids and bananas and rice for a couple of days or so until I'd feel hungry again. I'd gotten into that habit over the past year or so without thinking much about it, and I think that spared me from the damage of the full-on every day gluten diet. I don't think I'm going to go back on gluten to pursue a diagnosis; instead, I'm more convinced that that's not necessary.

I've been reading more about celiac and remembered that, about a month or so into the 3 months on gluten, I went to a drop in clinic with itchy blisters/rash that were starting to crop up on my legs. They said it was flea bites, but there were none on my dog or husband. Now I'm wondering if it's DH, but it's not active now. Still have some dark scars, though. I wish I'd known about the connection at the time.

Anyway, thank you all so much for your feedback! I think I'll tell folks I can't eat wheat, and if they ask further questions, they've asked for the whole story, poor them, lol.

[nora-n]

Interesting about the itching things.

Are you aware of that DH blisters leave scars, as opposed to flea bites or mosquito bites?

And that DH patients typically are very gluten sensitive?

[capit]

I didn't know that...interesting.

I don't have any fresh blisters now, thank goodness. They were itchier than any bug bite I've ever gotten.

[ravenwoodglass]

I didn't know that...interesting.

I don't have any fresh blisters now, thank goodness. They were itchier than any bug bite I've ever gotten.

It does sound like DH especially if the scars are a purplish color. A diagnosis of DH is a diagnosis of celiac so if you can see a derm when you have an active rash they can biopsy the skin next to the lesion to look for the antibodies. Sometimes when we suspect DH we can make arrangements with a derm to call and get in fast when the blisters appear.

[capit]

A diagnosis of DH is a diagnosis of celiac so if you can see a derm when you have an active rash they can biopsy the skin next to the lesion to look for the antibodies.

If/when I get fresh blisters, I'll do my best to get a biopsy. Thank you for the information!

update: I've been doing a LOT better. I've been 25 days without wheat mostly--I had a slip up at a restaurant. It hurt but after a few days, I felt better again. It's amazing how better my joints and muscles feel now. Eating at home isn't a problem but I'm still getting the hang of eating out.