Negative Blood Test

[Aries]

Hello everyone, I received my blood test results and they are negative for celiac disease. Now what? My discomfort and digestive issue don

[danaf617]

Sorry about your symptoms. I'm having the same with the exception of the nausea and I, too, had a negative blood result. I was handed a dx for IBS and a script for meds. And despite my gastro just doubling my med dosage, I'm still having no relief from symptoms. I know your frustration.

After reading this forum for a few weeks, I decided to order the Gluten complete w/ gene test from Enterolab. I'm waiting on the results. I don't want to be dx with Celiac or a gluten intolerance but I sure am going to be disappointed if I still don't have an answer.

I hope someone here can give you advice on the next step to take so you can get to feeling better!

[sb2178]

False negatives happen. Diarrhea generally means a dr will order an endoscopy even with negative bloodwork.

I'd follow-up on the blood work and check your anti-gliadin antibodies (IgG and IgA) too if that wasn't done the first time. They can indicate a problem with gluten even w/o celiac disease. You could also do a diet trial (2-3 weeks gluten-free and then try some gluten and see what happens). But, do this under your doc's supervision so you don't interfere with a biopsy's results.

It could potentially be something else, so don't give up on the doctor yet. You don't want to have something like Crohn's Disease and not be monitored. But, if you end up with nothing other than "IBS", you could try going gluten-free and see if that helps...?

G'luck.

[ravenwoodglass]

In addition I would get a hard copy of the test results. Some doctors will consider a low positive a negative. Even one point into the positive range is positive. Also make sure they did a total IGA. If your total IGA is low that will cause a false negative on the other tests.

If you are going to opt for a biopsy, and yes there are some with neg blood work but positive biopsy, stay on gluten. If not then do a trial of the diet. You have nothing to lose. You can start the diet even if ordering the Enterolab tests unlike with the blood tests and biopsy.

I hope you get some relief soon.

[Aries]

Thank you for the responses and advise. My results are below.

Component Your Value Standard Range

TISSUE TRANSGLUTAMINASE IGG 0.11 <0.90- Index

TISSUE TRANSGLUTAMINASE IGA 0.21 <0.90- Index

I am really at a loss. All my symptoms point to celiac disease. I feel bad for being a little disapointed, now I'm back where I started, instead of having an answer.

[lucia]

The only way to know for sure is to stop eating gluten and see what happens. For most of us, the results of a gluten-free diet are dramatic. Doctors agree that false negatives are possible for both the blood work and the endoscopy.

That said (as you know), if you stop eating gluten now, your biopsy will be effected. As sb2178 said, once you get through all of the labs and the biopsy, you can do your own test by eliminating gluten from your diet for a period of time.

In my own case, that's the only way I would have known I'm intolerant since my lab tests and my biopsy came back negative. My doctor is completely on board with my "self-diagnosis".

[ravenwoodglass]

Thank you for the responses and advise. My results are below.

Component Your Value Standard Range

TISSUE TRANSGLUTAMINASE IGG 0.11 <0.90- Index

TISSUE TRANSGLUTAMINASE IGA 0.21 <0.90- Index

I am really at a loss. All my symptoms point to celiac disease. I feel bad for being a little disapointed, now I'm back where I started, instead of having an answer.

Try the diet. Please. That looks like a really strange reference range. Did they do a total IGA? If your total IGA is low that will throw off the tests. Also there are some of us who no matter how sick show up negative in blood work. I am one of those and it cost me many years because all my doctors, except the one who finally diagnosed me, trusted those tests. Do please do a trial of the diet.

[Skylark]

Yes, decide about a biopsy, then try the diet after it's done if you are getting one. It's really the only way to be sure. There are plenty of people with negative bloodwork and biopsy who still feel really crummy when they eat gluten.

[Buster68]

Hi, i have recentley had a blood test for celiac disease but the results where negative, but when i drink beer and eat bread and rice and breakfast cereals i have a terrible cramping feeling in the morning while visiting the toilet.I have recently found gluten free beer and bread, stopped eating rice and now eat gluten free cereals and no longer have any pain even though my test was negative twice.The only thing is i tend to yawn alot like i am tired all the time but that might just be me i guess.

[Aries]

Try the diet. Please. That looks like a really strange reference range. Did they do a total IGA? If your total IGA is low that will throw off the tests. Also there are some of us who no matter how sick show up negative in blood work. I am one of those and it cost me many years because all my doctors, except the one who finally diagnosed me, trusted those tests. Do please do a trial of the diet.

What do you mean by "That looks like a really strange reference range"? < 90 is the normal range designated by Kaiser. Are there other standards out there? I don

[ravenwoodglass]

What do you mean by "That looks like a really strange reference range"? < 90 is the normal range designated by Kaiser. Are there other standards out there? I don

[Aries]

Thank you, Ravenwoodglass! Kaiser does seem to have higher normal value ranges than other

[ravenwoodglass]

Thank you, Ravenwoodglass! Kaiser does seem to have higher normal value ranges than other

[Aries]

I have question....while doing your challenge, if you ate something that didnt have gluten in it, like a piece of fruit, did it still cause discomfort? For example: today I had 2 pieces of whole wheat toast for breakfast and 2 hours later I got the tell-tell sign of some abdominal discomfort and bloating; about an hour after that I ate a banana and the discomfort seems to get a little more intense. Once I go gluten free is it common to still have discomfort and bloating after eating even though it doesn't have gluten?

[ravenwoodglass]

I have question....while doing your challenge, if you ate something that didnt have gluten in it, like a piece of fruit, did it still cause discomfort? For example: today I had 2 pieces of whole wheat toast for breakfast and 2 hours later I got the tell-tell sign of some abdominal discomfort and bloating; about an hour after that I ate a banana and the discomfort seems to get a little more intense. Once I go gluten free is it common to still have discomfort and bloating after eating even though it doesn't have gluten?

Yes it is normal for any food to make us feel ill when we are doing a challenge. For one thing your still reacting to the gluten that was in the whole wheat toast. It takes awhile for the gluten to get out of your system and the purpose of the challenge is to keep the reaction going.

Some will still have some discomfort while they are healing after they go gluten free but that should pass. It also can be hard at first to figure out what is really safe and what isn't which is why a whole unprocessed diet is best at first. Gluten doesn't hide quite as much as it used to but cross contamination in the plant or your own kitchen can keep us symptomatic. That's why we need to get a new toaster, replace scratched pans and wooden utensils, colanders and avoid baking with gluten flours even if we aren't eating them.

There is also the issue of cointolerances which some of us deal with. An intolerance to soy and milk protein, casien, are common so it is best to avoid those while healing. Then after we feel better soy and dairy can be added back in one at a time to see if we tolerate them.

Some of us heal more quickly, I for example had my 'IBS' and migraines resolve within the first week gluten free. I was eating only whole unprocessed foods at the time though.

[Aries]

Ravenwoodglass, you are a wealth of information, thank you so much. It

[ravenwoodglass]

Ravenwoodglass, you are a wealth of information, thank you so much. It

[Fey]

Hi,

Posting here for the first time and figured I'd piggy-back on this post.

I have had a migraine for four weeks (almost going on five now) that has been unresponsive to every medication I've tried so far. After a couple of people recommended that I try eliminating gluten, I looked up diets and came across celiac.

I'm a 25yo female, with a long medical history:

Childhood -

- Respiratory - strong environmental allergies (mold, dust, cleaning products, etc), asthma, bronchitis, pneumonia.

- Skeletal development - wore leg braces to correct feet and legs)

On and off anemia

- Digestive - heavy constipation, aphtous sores, "lazy" teeth (had 6 teeth pulled, and I still have 2 baby teeth because when they went to pull those, no permanent teeth had developed)

- Recurring bladder infections that had no rhyme nor reason.

Adolescence -

- Female problems since first period at 10, which lasted for 30 days. Irregular, painful periods since, did not respond well to hormonal birth control of any kind.

- At 15, had a "flare" that started with joint pain, "blushing", an swelling that began in the extremities and would affect my balance, ability to walk/control most muscles/etc. Tested for typical auto immune diseases, doctors at the time were "unwilling" to diagnose Lupus (SLE) yet despite positive ANA and high SED rate.

Adulthood

- Flares returned when I was 19, diagnosed with Lupus, Sjögren's, Reynaud's, and - Fibromyalgia by rheumatologist.

- Depression/Anxiety.

- Female and GI problems didn't get any better.

- Two herniated discs for no reason - puzzled doctors and physical therapists.

- Abdominal surgery last September, where they went in for my appendix (which was "very distended" according to CAT scan) but found a ruptured ovarian cyst during the laparoscopy. Returned to the hospital 3 months later with same symptoms, no appendix for them to blame it on, so got sent home with a prescription for painkillers.

Family History:

Mother had very similar problems, and was diagnosed with fibro 2 yrs after me. Also has been hospitalized for diverticulitis 3x (once after eating pasta at an Italian restaurant, once after eating Japanese food at a small restaurant).

My GI problems have been "bothersome", and I've been give the "you probably just have IBS with constipation" spiel, but no treatment has worked. Activia, fiber supplements, unsavory oils of all kinds, laxatives, etc -- everything just works for a week or two, maybe a month, then stops again. And I know going to the bathroom 3x a month is NOT NORMAL, and that's how I've been my whole life.

So now, this migraine came up, and the joint pain, swelling and "flushing" (skin turns red and feels hot to the touch, almost like a hot flash) are back, and I've noticed that my headache/nausea got worse when I ate, or in the morning after certain meals before bed, it would be just unbearable.

Also I realized all my symptoms got worse after moving to the US (when I was 16), when my diet went from being on a low-gluten diet (pinto beans, rice and meat/veggies and a lot of alternative flour for foods, like manioc and soy-based flours) to a high-gluten lazy-grown up diet (hamburger helper, restaurant eating, ramen, etc). My first flare at 15 was when my mother had gone out of the country and I was eating a lot of high-gluten foods as well while she was gone.

I got tested by my family doctor this week, for endomysial antibodies only, but I was so nauseous over the past month that not much stayed in my stomach, plus I've taken steroids (believing it to be a lupus flare at first) and high dose of anti inflammatory shots that could've affected the test. It came back negative but I have not seen the exact value or the reference ranges (will get a copy next week).

After my blood test on Tuesday, I completely cut out gluten. First day I was miserable. Second day I woke up with no nausea and barely had a headache, and only felt nauseous after eating a heavy (gluten-free) meal . Third day was same as second. Fourth day (today) I am back at work and my headache has made itself known, but I'd rate it a 3 or 4 on the pain scale compared to the 8-9 it has been for the past month.

I can't wait to see what other symptoms might disappear over the next few months! And I'm going gluten-free even with a negative blood test for the time being.

[RoseTapper]

I just returned from a gluten intolerance conference in Minneapolis, and an expert there stated that 7 out of 10 blood tests come out negative UNLESS there is total villus atrophy. Very sad. Also, biopsies are notorious for false negatives because of the lack of competency of the doctor performing the biopsy, the fact that the damage may have occurred beyond the reach of the scope, and because many pathologists have not been adequately trained to diagnose celiac. I'd suggest following a gluten-free diet; otherwise, you'll just make yourself sicker.

[missladyj]

I just returned from a gluten intolerance conference in Minneapolis, and an expert there stated that 7 out of 10 blood tests come out negative UNLESS there is total villus atrophy. Very sad. Also, biopsies are notorious for false negatives because of the lack of competency of the doctor performing the biopsy, the fact that the damage may have occurred beyond the reach of the scope, and because many pathologists have not been adequately trained to diagnose celiac. I'd suggest following a gluten-free diet; otherwise, you'll just make yourself sicker.

7 out of 10?!?

do you have a link or anything??