Negative Tests But gluten-free Diet Works

[ginnym]

I'm hoping someone on here can help me work my way through the contradiction of my symptoms and the coeliac tests that I've had. Apologies in advance for the long post

In January this year I started with severe, inflammatory-type pain in my upper abdomen, with some nausea. It seemed to be worse after eating and consequently my food intake dropped significantly. Initially ulcers etc were suspected and I was referred to a general surgeon. I had an endoscopy within a month of symptoms starting. This showed "subtle signs which may be consistent with coeliac" and a blood test was recommended. By the time I had the blood test I was eating practically nothing (I've now lost a fifth of my body weight). The blood tests came back negative for coeliac. Because everything was taking so long and I was in so much pain, my GP suggested a trial gluten-free diet. This brought about a spectacular improvement. A recent test consumption of HP sauce, produced a new bout of pain within hours which lasted for a couple of days so I'm back gluten-free and almost without pain.

I saw the hospital last week and updated them on my diet trials. They were totally uninterested and told me categorically that it was impossible to get a false negative result on the blood test, even though I'd eaten very little food in the preceding month. They also said that if the blood test was negative for coeliac and there was no villous atrophy on the biopsy, then gluten couldn't be the culprit. They're now pursuing some wacky idea about blood supply to my abdomen. I'm confused because I've read a lot of information that says you can have false negatives on blood test, and also that it is possible to be gluten intolerant without it necessarily being coeliac. My experience on the gluten-free diet would seem to support my feeling that gluten is responsible. I subsequently asked for a copy of my biopsy which says that my lymphocyte levels were at the "upper range of normal", although the actual count isn't on the report. It also says that chronic inflammatory cells are towards the upper range but that there was "no convincing villous atrophy". My research suggests that raised lymphocytes are now considered one of the lower grades of coeliac, even without villous atrophy.

I'd be really grateful if anyone could answer a few questions:

Is it possible that I do have coeliac even with the supposedly negative tests?

Is it possible to have false negatives on the blood tests?

Is it possible to have a gluten intolerance without coeliac damage?

Are raised lymphocytes an accepted grade of coeliac and if so, what is the count threshold?

I'm debating asking to be referred away from the surgical team to a medical team who may know more about coeliac and I'm also considering complaining about the information I was given last week but I need to be confident that I'm on the right lines before I go making waves.

Sorry for the long story - I'm desperate for anwers!

Many thanks

Ginny

[Rachel--24]

Is it possible that I do have coeliac even with the supposedly negative tests?

Yes....its possible. The tests arent 100% reliable (especially the biopsy).

Is it possible to have false negatives on the blood tests?

Yes.....it is certainly possible...especially if one is IgA deficient....or not consuming enough gluten in the diet.

Is it possible to have a gluten intolerance without coeliac damage?

Yes...many people have gluten intolerance without actually having Celiac Disease. Gluten intolerance can also be caused by other conditions which may lead to increased permeability.

Are raised lymphocytes an accepted grade of coeliac and if so, what is the count threshold?

Increased numbers of intra-epithelial lymphocytes are found not only in coeliac disease but also in other medical conditions.

Since you have had a very positive response to the gluten-free diet you may very well have Celiac Disease. If you are looking for more evidence you can have genetic testing to determine whether or not you carry the main Celiac genes.

After having been on the diet for some time you could also repeat the endoscopy to see if the lymphocytes have gone down.

[kayavara]

I had a negative blood test and a negative endoscopy.I still question the endo because it said I had "villious blunting with atrophy".Inflamation was mentioned also.When the doctor called I was told the atrophy could also because by acid reflux....so he was not 100% sure and called it negative.

He told ne to go on the diet,inform my siblings and think about testing my son.I thought that was enough to scare me into the diet.After being gluten free for nearly 3 months...I have had no abdominal pain,bloating,excessive gas,heartburn etc.That's proof enough for me to stay gluten free.

I can't give you much more info as I don't have the knowledge that many veterans here do....they will have excellent answers for you....I'm sure.

Good Luck

[nora-n]

Dr. Lewey did comment about the significance of increased intraepitelial lymphocytes and celiac in several postings on his blog.

[Lockheed]

I think I was in a similar boat. I was so sick that I wasn't eating much of anything. I didn't have the leaky gut syndrome but went the other direction and actually couldn't go for five weeks which is what prompted getting me in to a GI specialist pronto. In short, I came back with one negative marker on the blood test and one positive (so it was interpreted as either a false negative or a false positive) but inflammation consistent with celiac in the colonoscopy. I also had had the LEAP test done and it indicated a food sensitivity to wheat rye oat barley hops amaranth soy and millet. So my doc told me to go gluten free right away. By the time they got me in for an endo I had been gluten free for two months and there "wasn't much inflammation to note but previous irritation and scarring that could be consistent with celaic disease" I was told by that specialist that if gluten free worked for me don't question it. Later on another specialist told me that she believes there is a range on celiacs. Some are super sensitive and can't even handle cross contamination, others may have a response to cross contamination that is not substantial and she thinks that some others might not even respond to levels like cross contamination. She rather indicated to me that being celiac is a range and it depends on how sensitive you are and how much you have in your system before your system reacts.

And no test is perfect. Any doctor that tells you that needs to go back and retake their stats courses.

[tabdegner]

I also had a negative blood test and a negative biopsy. However, the gluten-free diet CURED me of years of pain. Since I have a strong family history of celiac (mom and sister have it) and I also have type 1 diabetes and Hashimoto's thyroid, my current doctors all agree that I probably have celiac. The biopsy was done very early on and I just don't think I had enough damage to show up yet. The damage can be very spotty and missed on a biopsy if there isn't enough damage.

I have also known more than one person that had a negative blood test and a POSTIVE biopsy, so yes, the blood tests are not always accurate.

Good luck in your journey.

[ginnym]

Thanks for all your replies folks. I think I've now got enough info to challenge the hospital on their stance that gluten can't be the culprit just because the blood test was negative. I'm quite happy for them to explore all possibilities but I'm concerned that they've dismissed gluten out of hand in spite of the clinical signs.

I suppose I want to be absolutely sure before I embark on a lifetime diet and there's still a nagging doubt in my mind because my symptoms aren't entirely typical of Coeliac. I don't have any bowel disturbance - my "only" symptom is severe upper abdominal pain and some nausea. I've just done a trial and eaten a couple of biscuits which produced some nausea and discomfort within an hour or so but not the severe pain I had before I went gluten free. I'd really hoped it would be more dramatic so that I'd be absolutely certain in my own mind but maybe I need to try it with more than a couple of biscuits.

[ginnym]

Dr. Lewey did comment about the significance of increased intraepitelial lymphocytes and celiac in several postings on his blog.

Do you have a link to the blog?

Ignore that - I've found it via Google.

[dbmamaz]

Just remember, the doctors work for YOU. If you dont like the doctors, fire them and get new ones. They cant tell you what to eat . . they can tell you what they think they see. They dont know everything. If you want more diet proof, eat a full meal w gluten in it, three times a day for a day or two, and see if you believe it now. Then stay off the gluten and dont go back to the doctors until you feel sick.

Just my personal opinion

[ginnym]

Just remember, the doctors work for YOU. If you dont like the doctors, fire them and get new ones. They cant tell you what to eat . . they can tell you what they think they see. They dont know everything. If you want more diet proof, eat a full meal w gluten in it, three times a day for a day or two, and see if you believe it now. Then stay off the gluten and dont go back to the doctors until you feel sick.

Just my personal opinion

I'm in the UK so it's not that easy to fire the doctors! Even though we supposedly have the right to choose, I live in a rural area (the Lake District if anyone's been here) and we only have one hospital which limits my options. However, I'm currently under the surgical gastro team so I'm going to ask to be transferred to the medical ones who should know more about things like Coeliac. Luckily my GP is very good and I'm sure he'll be happy to look through some of the stuff I've researched about Coeliac - he's not frightened to admit he doesn't know everything and he treats me like an intelligent adult. However, in order to get the right tests etc, I need the hospital to accept that gluten is the cause of my symptoms.

Since I posted earlier on today I have had more reaction to the trial of two "ordinary" biscuits so I'm now pretty sure in my own mind that it is gluten even if the tests aren't conclusive (maybe I was just in denial before). It's given me the impetus to challenge the hospital so it was worth doing, even though it's painful.

[Joon]

I also had a negative blood test and a negative biopsy. However, the gluten-free diet CURED me of years of pain. Since I have a strong family history of celiac (mom and sister have it) and I also have type 1 diabetes and Hashimoto's thyroid, my current doctors all agree that I probably have celiac. The biopsy was done very early on and I just don't think I had enough damage to show up yet. The damage can be very spotty and missed on a biopsy if there isn't enough damage.

I have also known more than one person that had a negative blood test and a POSTIVE biopsy, so yes, the blood tests are not always accurate.

Good luck in your journey.

I'm in the same boat as tabdegner here and I am a week away from a small bowel x-ray. The GFD has helped me immensely and the doctor is saying it looks like I have an "intolerance," though my whole mother's side of the family has celiac disease. I have been so discouraged after getting my blood test and biopsy results because I have been incredibly ill. The GFD has been helping so much though.....

I hope the small bowel x-ray will show some damage. I can't believe I am hoping for positive results; it feels crazy to me.

At the same time, doesn't it seem like a really weird coincidence that I would have an intolerance when celiac disease is so prevalent in my family? And that I would skip gluten and my wicked symptoms would go away in a week? It just seems extraordinary. My workmates can't get over the difference in me.

I really do feel for you....

[happygirl]

I suppose I want to be absolutely sure before I embark on a lifetime diet and there's still a nagging doubt in my mind because my symptoms aren't entirely typical of Coeliac.

It doesn't have to be a lifetime diet if it doesn't work. Its often called a gluten free trial. Go gluten free for "x" amount of time. If it works, stick with it. If it doesn't, then go back to gluten.

[happygirl]

And share this article with your doctors. Highlight the part I am including here.

Open Original Shared Link

"According to the Mayo Clinic, this study, which is the first of its kind, used capsule endoscopy to view intestinal damage in 38 patients with untreated, biopsy-proven celiac disease. Indications for clinical evaluation were

malabsorption syndrome and iron deficiency anemia. Ninety-two percent had visible damage detected by capsule endoscopy while upper endoscopy only detected visible damage in 55% of the patients. Neither capsule endoscopy nor upper GI series yielded false positives."

[IMWalt]

I also had a negative blood test and a negative biopsy. However, the gluten-free diet CURED me of years of pain. I have also known more than one person that had a negative blood test and a POSTIVE biopsy, so yes, the blood tests are not always accurate.

Good luck in your journey.

Right on all points.

I think I will post my history here and then copy into the post about histories. I don

[Joon]

Right on all points.

I think I will post my history here and then copy into the post about histories. I don

[IMWalt]

Thank you so, so much for this story, Walt.

You are welcome. My GI wanted to do a small-bowel x-ray, but I declined. She mentioned the posibility that my issue could be Crohn's or ulcerative colitis. If everything I ate gave me a problem and I had no family history of celiac, maybe. But all I know is that a gluten-free diet makes me feel great. That's enough for me. She also suggested the gene testing but I declined that as well, One more expensive test that I don't need.

Good luck!