Neg Bloodwork, Neg Biopsy, But Diet Works

[Katsby]

I had my post-endoscopy appt today and I was told that all my biopsies were negative except one that took longer to come back and it was iffy. He didn't use that word exactly, but I mean I guess I am disappointed. I do believe I have Celiac Disease. I had every classic symptom: chronic D, stomach pains, gas, bloating, food coma after eating gluten, exhaustion, weight loss, etc. It all went away, every bit, the day after I stopped eating gluten. I feel 100% better and so many people have complimented me on my complexion and how healthy I've been looking lately. I'm not longer super pale and sickly looking.

The GI Dr. also told me he was happy that the diet was working for me, but because of the biopsies he couldn't diagnose me with Celiac Disease, but he said he could also not say that I didn't have it. I feel like I will never know for sure. During my endo they saw that my mucosa was flat throughout my entire duodenum. He said it was possible it was the beginnings of the disease, and that I was lucky that it hadn't progressed further, but still he couldn't say for sure that I had it. I felt and still feel frustrated. I mean what else would cause damage there and even in my endo report he stated my exam looked suspicious of celiac disease. (btw I also had a colonoscopy the same day and we ruled out just about everything else). He also told me to continue on the diet, but if I wanted to try gluten again some day down the line to go ahead. If I got a reaction then there was my answer he said. I never want to eat gluten again.

I always told myself that having a hard diagnosis wasn't important. What was important was that I stopped running to the bathroom a million times a day, wasn't in tears from pain, that people could no longer hear my stomach making noises in public, that I didn't always look pregnant with bloat anymore. Deep down I kind of wanted the diagnosis, though, because I guess I am afraid people will think I'm "crazy" or a hypochondriac or something. The diet definately has changed my life for the better, though.

Have a lot of you had the same thing where you had negative or iffy biopsies, but still responded well to the diet?

[Ursa Major]

You are not alone with this problem. Those biopsies are not all that reliable to begin with. And when you then add a doctor who doesn't seem to know what he is looking at, you have a real problem.

It sounds to me like the biopsy should have confirmed the celiac disease. Are you able to get a second opinion from a real specialist? You wouldn't have to have another biopsy, but get another, more knowledgeable doctor to look at the same slides?

At least your doctor should give you a diagnosis of gluten intolerance, if nothing else. And yes, you should tell people you have celiac disease, what else would it be?

I didn't even have any testing done at all. But to silence the doubters who would tell me that I should be fine to eat gluten, I tell them I have celiac disease. After that, nobody questions my need for being on the gluten-free diet, and they will try their utmost to keep me safe. Otherwise I would feel that they wouldn't take me seriously enough.

[aikiducky]

I think actually that this doctor sounded pretty reasonable. He wants to keep to the guidelines that he has for diagnosing celiac, but did acknowledge that the diet works for you, and that you very well may have the beginnings of celiac. That's much more than a lot of doctors are willing to say, sadly enough. It's just kind of a definition problem the doctor has, for what he can call celiac and what he can't. He even told you to continue gluten free. How does that make you a hypochondriac?

If you are afraid that people are going to think you're weird for eating gluten free, you can tell them that your doctor told you to, and you wouldn't be lying!

So far no one has ever asked me to produce a diagnosis on paper when I asked people to be careful with my food, you know.

Pauliina

(I don't have an official diagnosis, btw)

[Katsby]

Well I'm pretty limited to where I can go within my insurance plan. Thank you for your replies.

My GI Dr. did ask me about my diet and if I found it too restrictive. I said sometimes, but not so much since I don't eat a lot of packaged stuff anyway. I told him I mainly shopped the perimeter of the store and that I went to whole foods for some of the alternative things like specialty bread and pasta, etc when he asked me what I was eating/bought at the store. I told him I had cut gluten out of my diet, and he said but you're still eating bread. I was like uh rice bread. He told me it sounded like I had cut out too much and I was so very confused because I thought I had only cut out gluten. I'm still eating dairy, soy, eggs, etc. That's when he told me that in the future if I felt it was too restrictive to add it back in slowly. I don't think I will though.

Ya at least he told me I may have it. The fear of being called a hypochondriac kind of comes from people looking at me strangely when I said "I can't eat that it has natural flavors in it" or "modified food starch". I suppose all the hidden gluteny things. My friends respect my decision to eat gluten free. They have seen me at my sickest and now they see me well so I don't think I will have problems from those I know.

[cmom]

A GI doctor that tells you that you can add gluten back in if it's too restrictive? What a gem!!! Must be a member of the "Don't have a clue" club. (Sorry, I'm a bit jaded when it comes to the medical profession.)

[katbird]

I am going through the same thing. I have two kids who were diagnosed with Celiac, one of them with Type 1 diabetes. I thoguht for sure that I had it as well, as I have many of the symptoms but could never figure out what was wrong with me. After my daughter was diagnosed with diabetes, they automatically testted her for Celiac. She came up posiive. So were were all tested. I thought I finally had an answer to my problems. But, all my bloodwork and my biopsy came back negative. I still feel really yucky and am contemplating just going on the diet. I feel just like you, though, in that it is hard for me to do something without an actual diagnosis. The fact that you feel much better makes it easier for me to try the diet. After all, I have been cooking and feeding 2 of my kids the gluten free diet, so it shouldn't be too hard.

[ginnym]

I'm in exactly the same situation (I posted a little while ago on this forum). I know from having experiemented with the diet and reintroducing gluten that I've got a gluten related intolerance but my doctors won't say it's coeliac. First thing to say is that, from what I've read, it's possible to have a gluten intolerance without it being Coeliac Disease. Some people feel the first is just an early sign of coeliac but others think they're different. Second thing is that it's possible to have false negatives. I had my biopsy first and it showed mild signs which the pathologist said could be coeliac. I then had a negative blood test but was so unwell by the time I had it that I'd eaten practically nothing for the previous 4 weeks which means I may not have had enough gluten in my system for the antibodies to show up. The hospital are unwilling to diagnose off a mildly suggestive biopsy and negative bloods but I'm pursuing it with them.

I've also had people wonder why I'm so anxious to get a definite diagnosis if I know that the diet helps. There are two reasons why I want to be sure whether it's Coeliac Disease or "just" gluten intolerance.

Firstly, here in the UK you don't automatically qualify for food on prescription unless your doctor says it's coeliac, nor do you get the same level of membership of Coeliac UK.

Secondly, it it's Coeliac then I know I have to stay gluten free for the rest of my life. If it's "just" an intolerance then it's something which may resolve in time, in which case I could safely reintroduce gluten.

[Katsby]

Secondly, it it's Coeliac then I know I have to stay gluten free for the rest of my life. If it's "just" an intolerance then it's something which may resolve in time, in which case I could safely reintroduce gluten.

That's why I want to know too. I guess I'm afraid of having the beginning stages of celiac and if I reintroduce gluten thinking that I can because I think it's just an intolerance. I may be asymptomatic at that time, but really doing dmg inside.

Also before my blood test I was barely eating too. I was pretty much scraping by on crackers and a few other things because I could barely keep it in my stomach, but I thought this was enough gluten to show anything. I have to reveal that the neg biopsy could be my fault because I went gluten free about a week and a half before it. I didn't realize it could really affect things because I figured if there's damage, then wow it must be pretty bad and doubted it could heal that fast. Plus I was so sick I could barely get out of bed and my hair was starting to come out and I was pretty desperate to feel better. I think I should have toughed it out, but it's hard sometimes because from the point of being referred to a GI Dr. to the actual endoscopy took 6 months here in the US. That's a long time and I had already lost 25 lbs. I thought at the time I made the right decision to go off gluten, but I guess it was the wrong one. I'm glad I did go off gluten though. I feel like a new person.

I guess I am just worried about his suggestion to reintroduce things later down the line.

[ginnym]

That's why I want to know too. I guess I'm afraid of having the beginning stages of celiac and if I reintroduce gluten thinking that I can because I think it's just an intolerance. I may be asymptomatic at that time, but really doing dmg inside.

Also before my blood test I was barely eating too. I was pretty much scraping by on crackers and a few other things because I could barely keep it in my stomach, but I thought this was enough gluten to show anything. I have to reveal that the neg biopsy could be my fault because I went gluten free about a week and a half before it. I didn't realize it could really affect things because I figured if there's damage, then wow it must be pretty bad and doubted it could heal that fast. Plus I was so sick I could barely get out of bed and my hair was starting to come out and I was pretty desperate to feel better. I think I should have toughed it out, but it's hard sometimes because from the point of being referred to a GI Dr. to the actual endoscopy took 6 months here in the US. That's a long time and I had already lost 25 lbs. I thought at the time I made the right decision to go off gluten, but I guess it was the wrong one. I'm glad I did go off gluten though. I feel like a new person.

I guess I am just worried about his suggestion to reintroduce things later down the line.

The advice from Coeliac UK is that you need to be eating the equivalent of 4 slices of bread a day for 6 weeks before the tests - I probably hadn't eaten that in the previous 3 weeks before mine!!

I suppose if you're feeling well on the gluten free then there's no reason to reintroduce gluten later on. I've been gluten free for about 6 weeks and was feeling much better but after the hospital made me doubt things, I experimented this week by eating 2 plain biscuits (Rich Tea, don't know if you have them in the US). It took 36 hours but I then had 3 days of severe abdominal pain which was enough for me to go back gluten free. It also makes me very, very reluctant to re-introduce gluten for the length of time they say is necessary before testing. For the time being, I'll stay gluten free and if the docs still insist it's a gluten intolerance rather than Coeliac, then I might just do a similar experiment every few months.

[ksymonds84]

I too tested negative to celiac but the diet works for me. I did however get the rash that could be HD so if it ever comes back I will have it biopsied. My doctor is very impressed at how well I am doing with the diet and said that he is officially diagnosing me as gluten intolerant on my charts to help with any prescription medicines or a hospital stay (this was back in March). He couldn't say Celiac on my charts because even though he feels I have it, the test did say negative. I can live with that.

[CamiJ]

Hey, I'm new here, but this is all very familiar stuff to me! I've tested negative twice on the bloodwork, and I had my endoscopy/colonoscopy last week. The GI said he found areas of blunted villi, but he said that as he has also seen blunted villi in normal, healthy intestines, it was inconclusive. (!) Really? I thought that blunted villi was by definition unhealthy! Anyway, the biopsies are with the pathologist now, so hopefully he/she will have a better idea what they're looking at. The GI did write "suspicious for celiac" on his report. Anyway, I had to really insist on being biopsied in the first place. I have all of the classical symptoms (and have had most of my life), and recently I've lost about 20 lbs without trying. I've been so sick lately that I only have a few productive days a month. I went to 3 doctors before the GI who all thought I was probably just having a bad case of post-partum depression. I'm not so much depressed, but they figured that would explain the fatigue, headaches, and abdominal issues. The GI told me that celiac was unlikely because of the negative bloodwork, and the fact that my iron levels were normal. I pushed for it because celiac is the first thing that actually really matches up with all of my symptoms. I also have a strong family history of celiac (several first cousins have it, an uncle who died as a child of it, etc.) I binged on gluten the week before the endoscopy, and I was sicker than ever. I started gluten free about 3 days ago, and I think I'm noting some improvement. So, I think I have a compelling enough case. What do you think? Is blunted villi ever normal?

[Live2BWell]

Wow, I first off want to say that your doctor really sounds pretty reasonable! I think for a doctor to be validating and to think outside the black & white of what results say, is a rarity (or atleast in my own experience!) I do understand about feeling like a hypochondriac though, so many (( Hugs )) to you, it can really take a toll on someone emotionally and physically! The fact that you have your doctor on your side, is seriously a good thing. I have not been so lucky with doctors, at all, and I continue to be sick and see unsupportive and closed-minded medical "professionals". Even with abnormal test results coming back, I haven't gotten very far other than "it's not that bad" or "it's not too serious" and I've been poo-poo'd and shuffled around for 2 years. I have started seeing another round of doctors though, and so far I am hopeful.

If it were me, in your case, the doctors validation would be enough for me to just assume the lifestyle of what works - works, and obviously your doctor says go for it, so go for it ! If your doctor thought you were completely off your rocker, so to speak, he wouldn't be backing you up at all (it sounds like he is trying to stay within normal medical ethics and guidelines.) As for family and friends, if gluten free works and your doctor isn't saying the you are definitely not gluten sensitive and/or Celiac, I would just go with you are and leave it at that. Your friends/family really don't need to know the details, because that may just make things more difficult in the long run.

But that is just my two cents

[gfpaperdoll]

I hate to burst anyone's bubble, but those of us who suffer with gluten intolerance cannot ever add back in gluten & we know that. & a lot of us will test negative on every test except the one that matters, dietary trial.

If you eat 6 wheaty donuts for breakfast & get sick, you really do not need a prescription to quit eating donuts.

Doctors run the gamut of ignorance, indifference, inflated ego... They think that the average patient is too stupid & lazy to follow a diet regimen that will make them feel better.

To the original poster, I would be getting a second opinion to read those biobsies. If even one is abnormal that is a postive result. Just means that not all 22 feet of intestine is completely damaged. AND, there might be other damage that they are just overlooking.

& to the poster that had flattened villi but not a diagnosis of celiac, that is just not right. The doctor could just be wanting to know what happens to you if you continue to eat gluten. That sounds like a good experiment to me, tell a patient that they do not have celiac & record their ever worsening symptoms. Makes you think that maybe these doctors have a quota of celiac diagnosis that they are able to diagnose. Remember they are mostly owned by the insurance companies.

[munchkinette]

Yeah, I"m in the same boat. 3 months after going gluten free I could have done the real challenge, maybe. NOW- No way. I had to come home early from a trip last month after getting glutened every other day for two weeks, and I was really messed up for a few weeks after that. That just came from sauces and stuff.

That whole thing with eating 4 pieces of bread a day for three months just for a biopsy is out of the question for me. The dietary response is so extreme. My allergist and psychiatrist both feel like the diet is enough evidence, even though they can't really call me celiac without the tests. My GP does not seem to take me seriously for some reason. I'm seeing a new GP next week.

[Gerri]

My blood work came back negative for Celiac. My doctor put be on a gluten free diet anyways. I have many autoimmune diseases. I read somewhere that a gluten free diet helps slow down the process of the autoimmune diseases.

I went to my Gastro, my liver enzymes, cholesterol, trycyclerides, constipation, all were within normal of following the gluten free diet. This and the fact I have Sjogren's, my Gastro is sending me for a biopsy, for Sept. 4th. She believes I have Celliac.

1st week back on gluten

1. Within one week, I flip-flopping back and forth with diarrhea, and constipation. (5 bread a day must be ate)

2. I am constantly bloated - so much so I have to wear some of my hubbies clothes, as I can't fit into mine.

3. Depression is so bad

4. I have much pain in my bowels

5. Pain in my joints is worsening - much pain most of the time

6. Brain fog really bad.

7. my sleep apnea has worsen

8. my insomnia is worsening

9. My Central Auditory Processsing worsening

10. My Sjogren's is worsening

11. I look 9 + months pregnant - miracle of science - and it's quite embarrising to go out

12. Lupus symptoms worsen

List goes on

I have still have many weeks to go.

Hugs

Gerri

[grommet]

I had my post-endoscopy appt today and I was told that all my biopsies were negative except one that took longer to come back and it was iffy. He didn't use that word exactly, but I mean I guess I am disappointed. I do believe I have Celiac Disease. I had every classic symptom: chronic D, stomach pains, gas, bloating, food coma after eating gluten, exhaustion, weight loss, etc. It all went away, every bit, the day after I stopped eating gluten. I feel 100% better and so many people have complimented me on my complexion and how healthy I've been looking lately. I'm not longer super pale and sickly looking.

The GI Dr. also told me he was happy that the diet was working for me, but because of the biopsies he couldn't diagnose me with Celiac Disease, but he said he could also not say that I didn't have it. I feel like I will never know for sure. During my endo they saw that my mucosa was flat throughout my entire duodenum. He said it was possible it was the beginnings of the disease, and that I was lucky that it hadn't progressed further, but still he couldn't say for sure that I had it. I felt and still feel frustrated. I mean what else would cause damage there and even in my endo report he stated my exam looked suspicious of celiac disease. (btw I also had a colonoscopy the same day and we ruled out just about everything else). He also told me to continue on the diet, but if I wanted to try gluten again some day down the line to go ahead. If I got a reaction then there was my answer he said. I never want to eat gluten again.

I always told myself that having a hard diagnosis wasn't important. What was important was that I stopped running to the bathroom a million times a day, wasn't in tears from pain, that people could no longer hear my stomach making noises in public, that I didn't always look pregnant with bloat anymore. Deep down I kind of wanted the diagnosis, though, because I guess I am afraid people will think I'm "crazy" or a hypochondriac or something. The diet definately has changed my life for the better, though.

Have a lot of you had the same thing where you had negative or iffy biopsies, but still responded well to the diet?

Another one here - gluten makes me very poorly - not just gastro symptoms. I had negative bloods and negative biopsy. Would I ever develop celiac disease - I don't know. Consultant not prepared to diagnose me with anything so am self diagnosed as gluten intolerant. 3 other members of my family are also ill from gluten so there is something genetic there.

The other option available is genetic testing to see if you are genetically predisposed to celiac disease. I haven't gone down that route yet purely because of cost. But it may be something you could consider.

I responded within days to a gluten free diet.

I would have liked to get a formal diagnosis mainly for my daughter and any children she may have. The gluten-free food on prescription is a minor side issue really. However in a way I am thankful I didn't have the villi damage and therefore haven't got full blown celiac disease. I also don't have (nor do other members of my family) have any other auto immune disorders for which I'm very grateful.

[IMWalt]

All of these replies sound like me. I have decided that I don't really care for an official diagnosis. All I know is that when I eat even a trace of gluten, I get symptoms ranging from cramps and very bad gas to terrible D. I can live with the symptoms, and did for many years, but my life is a lot easier now without feeling the need to run to the bathroom all day.

Good luck!