Correct Diagnosis

[rimsch]

Hello,

 

I have question concerning the correct diagnosis of celiac disease and/or gluten intolerance:

 

After I read the first things about gluten as a trigger of many symptoms and especially about celiac I immediately sopped eating gluten - also because a docotr told me that the tests would not be precise. However, after 2-3 weeks and much thinking about it, I decided that making the necessary tests for celiac (and/or gluten intolereance - this is another question: Can you test for gluten intolerance?) would be more senseful since it may be my last realistic opportunity for a long time. So...I started eating gluten again - and that was about ten days ago. Now I wonder if I'm already "ready" to take the blood test. My doctor said yes because my gluten-free diet only lasted a few weeks. The problem is that I read some other claims on several websites.

Now that you know my situation: Can I already take the blood test? And would it also be senseful to make an endoscopy if the blood test is negative? (That it generally makes sense seems clear but I'm referring to my specific concerns about not having eaten gluten again for a long enough period of time)

 

 

Thanks in advance, I really appreciate your effort!

 

 

 

[nvsmom]

Before doing the celiac blood tests, a gluten challenge of 1-2 slices of bread perday for 8-12 weeks is usually recommended.  You were gluten-free for 2-3 weeks and the resumed eating gluten 10 days ago?  I would personally try to consume gluten for a longer period of time so the test is at it's most accurate. I doubt you will need to go a full 8-12 weeks, but 2-3 more weeks would probably be a good idea unless you are able to test again in a month or so if the tests are negative... If your doctor is willing to retest if negative, then test now, otherwise I would wait a few weeks.

 

The endoscopic biopsy requires a 2-4 week gluten challenge for accuracy.

 

These are the tests you would want for celiac disease:

tTG IgA and tTG IgG - the most common test

DGP IgA and DGP IgG - newer test that tends to detect early celiac disease better

EMA IgA - generally positive when villi damage is more advanced

total serum IgA - a control test

AGA IgA and AGA IgG - older and less reliable tests, also the only tests that MAY show NGCI

 

Those tests are all for celiac disease.  There is no widely medically accepted test for non-celiac gluten intolerance (NCGI) although some believe the AGA tests can show that. If the celiac disease tests are all negative, you could have NCGI - the only way to diagnose NCGI is a positive response to the gluten-free diet.

 

Welcome to the boards and good luck with the testing!  

[rimsch]

Thank you for your answer! And also thanks for welcoming me - I'm really happy that I found this forum.

 

Anyway, another question appeared for me:

 

From what I've read the endscopy seems to be more reliable than the blood tests: Is there a possibility of having a negative blood test but a positive endoscopy result?

[nvsmom]

  On 5/15/2014 at 12:20 AM, rimsch said:

 

From what I've read the endscopy seems to be more reliable than the blood tests: Is there a possibility of having a negative blood test but a positive endoscopy result?

Oh yes! Conflicting test results is one of the main problems people have in getting a diagnosis. I have seen some blood tests negative and others positive, negative biopsy but positive blood tests, or negative blood tests but a positive biopsy.... Just remember that a positive is a positive. There are very few other health issues that will cause a positive celac test besides celiac disease.

Best wishes.

[rimsch]

Thanks again four your answer!

 

I'm sorry but I have another question

 

How long should a gluten-free diet be to know for sure if I have a problem with gluten (if it shows results: who cares what it is exactly)?

 

Right now I'm a little bit sceptical about my the decision of stopping the diet I already had begun. I mean if there is a length of time after which it can definitely be stated "If you don't experience improvement/release of your symptoms after xxx months then you don't need to worry about gluten" it should be enough to just make the diet, am I right?

 

Of course you don't have this absolute kind of certainty. However, I feel like I don't want to wait another 3 weeks for making the blood test, let alone the endoscopy (could be difficult to get an early appointment) although it's clear that I have to start a gluten-free diet anyway regardless of the test results.

 

Are there any strong arguments against this thought?

 

Thanks in advance!

[nvsmom]

For most people, quite a few months are needed to see the most benefits from the diet. Six months is the norm it seems. Some people are fully well at three months but others take a few years. That being said, most people show some improvements in the first few weeks although those who experience withdrawal tend to feel worse before they feel better.

Most people feel better within a month and continue to improve, with the occasional set back, for many more months.

[rimsch]

Thanks again for your answer.

 

I have another general question concerning the gluten-free diet.

 

If start a gluten-free diet: How do I know if I already react to small amounts of gluten (in your forum its called "minute levels")? I mean, I don't get any direct reactions after eating something so it probably would be at least very difficult to find out if my body also develops/maintains symptoms when being confronted with "minute levels" of gluten.

 

Thanks in advance!

[nvsmom]

There's no easy answer for that. You'll just need to stay very vigilant.  I don't always have horrendous reactions to gluten either but my symptoms do tend to grow worse with time. If you do feel "off" re-check everything - shampoo, lotions, vitamins, all food labels, spices - and you'll probably find something.

 

I've glutened myself over a period of a few weeks with 2-4 fries a week that had flour on them. It took me a month to realize I was being glutened and another week or two to figure out what it was from.

 

You'll make some mistakes, especially in the first few months, but you'll get the hang of it and it will become easier. Trust me!  

[rimsch]

Thanks for your answer.

 

Maybe you could also tell me something about my symptoms. To be more precise I'd like to know how common my symptoms are for celiac/problems with gluten.

 

The main problem I have is a condition called blepharitis which again causes really dry eyes. I also have some other skin problems like acne and seborrhoic eczema. I'm saying also because my blepharitis should also be understood as a skin problem. And the cause of these skin problems is a too high sebum production of my skin, also called seborrhea. (Acne and especially the seborrhoic eczema is under good control when using appropriate ointments; my real problem is the blepharitis). I saw at least seborrhea being listed on some "symptom-lists" in the internet. Additionally there I found some speculation about possible connections between acne and problems with gluten. Also there is the case of a famous german football-player who openly talked about how a gluten-free diet completely healed his acne (and this diet was done under the observation of doctors).

All in all I believe that it's not too far-fetched to consider gluten as a cause of my problems.

 

There are some other symptoms which made me focus on gluten.

- general digestion problems (but not that extreme, doesnt really bother me because it rarely happens; bloating I maybe do have a bit more often)

- I get extreme digestion problems when consuming milk products --> developed lactose-intolerance?

- joint pain --> only in my wrists and only when I stress them (for example by doing push-ups --> the weight which then lies on my wrists in combination with the position seems to be a problem for my wrists)

- dry hands when it's cold for a longer period of time (but then they can get really dry if I'm not using any ointment)

- "pale mouth sores" ( Open Original Shared Link ) just recently I had one but I'm not sure if I had another one before that

 

These were the clearly recogniazble symptoms. Not quite sure how to evaluate "fatigue", "discolored teeth" and "tingling and numbness" correctly since these are really subjective feelings. My teeth could be whiter but I think they're ok. I sometimes do feel fatigue - but who doesn't? And "tingling and numbness"...well, I have the feeling as if I were experiencing this more often since I rea about it being a possible symptom of celiac, so...

 

However, the description of the other symptoms is mainly there to give you the complete picture. But as I already said my main problem is the blepharitis respectively the seborrhea which really bothers me. How common are blepharitis and/or seborrhea as symptoms of celiac? ( The commonnes of acne and seborrhoic eczema would also be interesting since both conditions are linked to seborrhea.)

 

Thanks in advance!

[cyclinglady]

Nicole provided you with some pretty good answers.  Perhaps you should consider testing?  

 

There are over 300 symptoms for celiac disease, so you might have it.  Only testing can provide an answer.  I would definitely give up dairy completely for the next couple of months.  That may be affecting your eyes.  Not a milk/lactose intolerance (though possible) but a moderate milk allergy.  Do so research on that topic.  There may also be other foods that you may be intolerant to.  I would keep a food diary to see if you can find a pattern between food consumption and skin symptoms.

 

Good luck!  

[Questore]

  On 5/26/2014 at 9:36 PM, cyclinglady said:

Nicole provided you with some pretty good answers.  Perhaps you should consider testing?  

 

There are over 300 symptoms for celiac disease, so you might have it.  Only testing can provide an answer.  I would definitely give up dairy completely for the next couple of months.  That may be affecting your eyes.  Not a milk/lactose intolerance (though possible) but a moderate milk allergy.  Do so research on that topic.  There may also be other foods that you may be intolerant to.  I would keep a food diary to see if you can find a pattern between food consumption and skin symptoms.

 

Good luck!  

 

CyclingLady...where can we find the list of the 300 symptoms of Celiac?

[nvsmom]

  On 5/27/2014 at 12:30 AM, Questore said:

CyclingLady...where can we find the list of the 300 symptoms of Celiac?

 

Here's one version of the list of signs, symptoms, and related disorders: Open Original Shared Link