Help Need With Understanding Results

[Ellymay]

I was told yesterday that my biopsy results from a gastroscopy are normal (i.e non coeliac)

However, when I had the gastroscopy, the Gastroenterologist performing it said it looked 'patchy' and consistant with coeliacs. He told me I was likely to have it and to start on a gluten free diet, which I did.

After being on on a gluten free diet for 2 weeks, my routine diarrhoea has gone. And I am generally feeling better as a result.

Any ideas? Could this be early stages of coeliac (my blood test antibodies were "moderately positive") or gluten intolerance? Or signs of lactose intolerance (which I have had for several years)

Either way, should I avoid gluten to prevent further damage? If it is early stages of coeliacs, then I don't want to keep damaging myself until I get a positive result in years to come!

I'm to see the specialist for follow up in 6 weeks but any tips on what to do until then appreciated.

Thanks

Eleanor

[Ellymay]

I think I may have found an answer to my questions above. I found this comment by Dr Ford (aka Dr Gluten) on his facebook forum (Open Original Shared Link)and suspect it will be of interest to many readers.

"Your child's tTG (IgA) of 82 (normal range 0-20) is certainly high. In my data, examining the relationship between the levels of tTG and the biopsy damage, I have found that if the tTG is 100 or more, then nearly everyone has issued damage of Celiac disease. Those with levels between 50 and 100, about half have evidence of the damage by histology. Below 50, must have negative tissue biopsy results.

Remember, celiac disease is a progressive condition. So the people with low tTG levels, after several months or years of gluten ingestion, will have high levels of tTG. As I have stated on many occasions, it is best to be gluten-free before the disease becomes well-established.

Most medical practitioners are told that they must wait for serious gut damage before instituting a gluten-free diet. A pity."

My tTG is 47 putting me just under the threshold for a positive biopsy result. On the basis of the comment above I think I'll be going gluten free without waiting for a positive biopsy. Hopefully my Dr will take me seriously - does anyone else find their Drs, friends,etc don't believe you are really gluten intolerant because outwardly you appear normal?

[WheatChef]

47 is really high, there shouldn't be any doubt that you should try out a gluten-free diet.

It's certainly not uncommon for many people, both doctors and laymen, to be completely ignorant about this condition.

[Ellymay]

  On 5/25/2010 at 11:20 PM, WheatChef said:

47 is really high, there shouldn't be any doubt that you should try out a gluten-free diet.

It's certainly not uncommon for many people, both doctors and laymen, to be completely ignorant about this condition.

Thanks WheatChef. That is reassuring. So much for 47 being 'moderately positive'!

[kareng]

You can thank your GI for catching this before you did have a positive biopsy and a lot of damage. Strokes his ego a bit but hopefully will force him to treat it as Celiac.

[Jestgar]

  On 5/26/2010 at 1:06 AM, Ellymay said:

So much for 47 being 'moderately positive'!

Your lab results should come with a range. 47 might be < positive for your lab.

[Ellymay]

  On 5/26/2010 at 1:38 AM, Jestgar said:

Your lab results should come with a range. 47 might be < positive for your lab.

I checked the results again. It says:

tTG: 47 units (0-20)(I presume this range is the normal range?)

EMA antibodies: Negative

Interpretation: The tTG IgA is moderately positive

It also says it was run using the new generation Deamidated Gliadin IgA and IgG peptides as antigens (for improved diagnostic accuracy(notably specificity)

[Jestgar]

hmmm. If 0 - 20 were the normal range, then 47 would be really high. Maybe 0 - 20 is the negative range? It's really hard to tell when they don't give you complete information.

Either way, if you feel better off gluten - there's your answer.

[Ellymay]

  On 5/26/2010 at 4:19 AM, Jestgar said:

hmmm. If 0 - 20 were the normal range, then 47 would be really high. Maybe 0 - 20 is the negative range? It's really hard to tell when they don't give you complete information.

Either way, if you feel better off gluten - there's your answer.

I'm coming to that conclusion Thanks Jestgar

[Ellymay]

  On 5/26/2010 at 4:19 AM, Jestgar said:

hmmm. If 0 - 20 were the normal range, then 47 would be really high. Maybe 0 - 20 is the negative range? It's really hard to tell when they don't give you complete information.

Either way, if you feel better off gluten - there's your answer.

Just noticed in my quote in the second posting above that (0-20) is described as the normal range.

[Jestgar]

  On 5/26/2010 at 4:30 AM, Ellymay said:

Just noticed in my quote in the second posting above that (0-20) is described as the normal range.

Yes, but does that mean something like: 0-20 (no response, normal); 21-45 (equivocal); 46-100 (positive, high response). Or does it mean their whole test goes from 0- 20? That's what I mean about not giving you enough information.

It's like getting a test back from a class that says you got 38 points. Well, is that out of 50? 100? 200? Just where do I fit in the range?

[Ellymay]

  On 5/26/2010 at 11:20 AM, Jestgar said:

Yes, but does that mean something like: 0-20 (no response, normal); 21-45 (equivocal); 46-100 (positive, high response). Or does it mean their whole test goes from 0- 20? That's what I mean about not giving you enough information.

It's like getting a test back from a class that says you got 38 points. Well, is that out of 50? 100? 200? Just where do I fit in the range?

hmm... more questions for the Dr. It all seems a bit subjective- it's a pity that the classifications aren't more standardised (I am in NZ by the way).

And another question:

I got a copy of the report in the mail today which states "moderate patchy erythematous and post bulbar duodenitis was evident" from the visual examination. Does this just mean inflammation is present?

[nora-n]

It clearly says you did not have the ttg test, but teh new deamidated gliadin test, therefore the weird ranges.

I think they just use the old word ttg because otherwise doctors get confused.

[RoseTapper]

Your doctor clearly believes that the biopsy is the "gold standard" for diagnosing celiac, but Dr. Alessio Fasano, a leading celiac expert, recently spoke at a conference and clearly stated that this should NOT be the case. He and his colleagues will be publishing an article shortly on this subject that he hopes will convince many doctors that there is another way to definitely diagnose celiac. Dr. Fasano says that many doctors think they know how to do a biopsy correctly when they actually don't, many pathologists are not competent to read the biopsy, and the damaged part of the small intestine may be beyond the reach of the scope. Therefore, he believes that of the five tests for celiac (biopsy, symptoms prior to seeing the doctor, positive blood test(s), positive HLA (gene) testing, and the symptoms disappear on a gluten-free diet), if you have FOUR of them, then you have celiac disease. He says that dropping the biopsy out of the five "tests" for celiac is fine, since there are so many variables that can go wrong.

Therefore, you may wish to have the HLA test. That would mean that you do have four of the five indicators of celiac. The biopsy is irrelevant.

[nora-n]

Interesting about what Fasano said.

My daughter had a negative biopsy despite of abnormal looking small intestine and dramatic improvement off gluten. The doctor said some pathologists are just plain idiots.

Yes, I have already noticed some abstracts on pubmed or wherever about gluten free diet improving health status and symptoms despite of negative biopsy, but positive blood test. It is getting more popular to say that.

This is what we have said for years here.

[Ellymay]

Thanks Rose and Nora

I will ask my gastroenterologist about getting the gene test done- at least that way I may be able to rule out coeliacs. Although I suspect I do have it- or an intolerance. I have seen the following symptoms clear up over the last month- bad smelling diarrhoea, headaches, constant fatigue, mouth ulcers and inflamed gums, foggy brain, nausea and churning, tender guts. It is nice not to be hungry all the time and my husband says I am less irritable and more level headed! It would also explain my recurring b12 deficiency.

BTW My aunt has similar symptoms and has tested positive for the gene but negative on blood tests for coeliacs.

So, all in all. I am happy to stay gluten free. The only reason to get a proper diagnosis that I can see is to find out whether I need to be strict in my avoidance of gluten.

Thanks everyone for your comments!

Eleanor

[mushroom]

  On 6/4/2010 at 9:22 AM, Ellymay said:

The only reason to get a proper diagnosis that I can see is to find out whether I need to be strict in my avoidance of gluten.

I am sorry to say that the necessity for avoiding gluten is the same whether or not you test positive for celiac disease. As you will have read on here (take Ravenwoodglass as an example), there are those who never do test positive for celiac disease but have all the symptoms and disastrous consequences just the same. If you are intolerant of gluten you are still doing damage to your body by eating gluten regardless of what the tests say. Most doctors will not tell you this; in fact many do not even "believe" in non-celiac gluten intolerance because if you can't measure it on a test it doesn't exist ; nevertheless, it exists and you must be equally as strict as if you had the official diagnosis.

[Ellymay]

  On 6/4/2010 at 9:49 AM, mushroom said:

I am sorry to say that the necessity for avoiding gluten is the same whether or not you test positive for celiac disease. As you will have read on here (take Ravenwoodglass as an example), there are those who never do test positive for celiac disease but have all the symptoms and disastrous consequences just the same. If you are intolerant of gluten you are still doing damage to your body by eating gluten regardless of what the tests say. Most doctors will not tell you this; in fact many do not even "believe" in non-celiac gluten intolerance because if you can't measure it on a test it doesn't exist ; nevertheless, it exists and you must be equally as strict as if you had the official diagnosis.

Thanks for your advice Neroli

A friend of mine has coeliac disease and her dietician advises patients to keep a tiny amount of gluten in their diet (i.e. may be produced on the same packaging line as a gluten product) to avoid becoming hypersensitive to gluten (except for those who are already hypersensitive of course). I have had similar advice with regards to lactose intolerance and I think it makes some sense. Similar to the hygiene hypothesis which argues that children brought up in ultra clean environments do not have their immune systems prompted enough to develop normally and so their immune systems over react when later exposed to allergens/bacteria.

I believe if I am feeling healthy with no symptoms that is a pretty good indicator that I am eating right. I guess if I was concerned about latent damage I could always have blood tests down the line to see if those antibodies are still present - as an indicator of onging damage. Anyone out there with gluten intolerance who has done this?

[ravenwoodglass]

  On 6/4/2010 at 9:49 AM, mushroom said:

I am sorry to say that the necessity for avoiding gluten is the same whether or not you test positive for celiac disease. As you will have read on here (take Ravenwoodglass as an example), there are those who never do test positive for celiac disease but have all the symptoms and disastrous consequences just the same. If you are intolerant of gluten you are still doing damage to your body by eating gluten regardless of what the tests say. Most doctors will not tell you this; in fact many do not even "believe" in non-celiac gluten intolerance because if you can't measure it on a test it doesn't exist ; nevertheless, it exists and you must be equally as strict as if you had the official diagnosis.

Yes. You sure can have celiac and still have negative blood tests as my sig clearly shows. In addition you can not rely on the two genes that are typically the only ones they consider to be celiac associated, there are actually 9 but most doctors in the US don't know this. Do not rely on the gene testing for diagnosis, rely on your response to the diet. You have had a clearly positive blood test and if being gluten free resolves your symptoms you need to be gluten free. Whether you choose to call it GI rather than celiac in my opinion is a moot point. My doctor deemed me celiac despite the negative blood work. If I had been gene tested as a form or diagnosis I would be dead now instead of sitting here at the computer. My 'oddball' genes and consistantly negative blood work are the primary reason I am still here posting years after diagnosis. I really don't want what happened to me to happen to anyone else.