Am I Likely To Be Dx-Ed? Please Help!

[NoGlutenCooties]

Non-Celiac Gluten Intolerance is still a possibility.  You could try going 100% gluten-free and then after a couple of months try eating it again to see if you react negatively to it (try a small amount to keep the reaction minimal).  If you get symptoms again, then there's your answer.

[Justscared]

Non-Celiac Gluten Intolerance is still a possibility.  You could try going 100% gluten-free and then after a couple of months try eating it again to see if you react negatively to it (try a small amount to keep the reaction minimal).  If you get symptoms again, then there's your answer.

Yes, this is what I plan on doing. Today was my first day completely gluten free.

I did ask the dr. Whether I should get some blood tests anyway and he said no. So I will just have to try it with the elimination diet.

After all, I still have some symptoms I've had for years, including muscle / bone pain all over my back, occasionally flairing cheilitis at the corners of the mouth, chronic rhinitis, anxiety, low moods, sometimes foggy brain, etc. The latter, of course, could simply be good ol stress, as I am joggling a professional career, 2 kids and their increasingly demanding school needs, all while cooking from scratch daily, etc.

Oh, well - I'm just grateful for the good test results so far.

The gluten free journey will be interesting.

[GFinDC]

I suggest you still get the blood tests done.  If your doctor won't do them maybe another doctor will.

[Justscared]

I am thinking about asking my GP when I have the yearly physical in a few months.

For now, I will stay gluten-free.

[GottaSki]

I am thinking about asking my GP when I have the yearly physical in a few months.

For now, I will stay gluten-free.

 

You need to be ingesting gluten for any celiac antibody test.

 

Many folks become even more frustrated than you have been this past week when they remove gluten and then find out the tests are invalid.  Even a gluten challenge of 6 to 12 weeks is not as accurate as the data you would receive before initially removing gluten.  

 

I agree with Paul....try requesting the blood tests from your primary now...explain that you will be removing gluten which will invalidate testing in a few months with your annual physical.

 

Understand...if you improve gluten-free...it can be extremely difficult to reintroduce it at a later date...which may leave you in a tough spot.

 

Just trying to save you future aggravation

[Justscared]

Oh, gosh...duh!

Thank you for reminding me. I guess I will just call my GP and ask her to do the panel. I hope she won't refuse.

I was wondering if the 2 days of gluten-free I just had coupled with 2 more days I had two weeks ago could affect the results.

Tomorrow I'll eat gluten again, not that I need much encouragement for that, as this is definitely something I can do in spades.

I just wish this mess was over. My GI is very convinced I am 100% fine, so if he said " no need for blood panel", how should I put it to my GP?

I am glad to pay for the tests myself. Now if I make an apt with her, what should I say I want it for?

[Justscared]

I thought about it some more. Here are my worries now:

The GP might not take me seriously, especially after the GI sent her the biopsy lab report where it clearly says "no evidence of Celiac Sprue".

The insurance company will surely not want to pay for this blood panel after a Celiac dx was excluded with a biopsy.

What kind of reason should I give for setting up this next appt with my GP ? Or should I ask for the blood panel over the phone and if she says ok, just go in to have the blood drawn?

I am not even sure how to approach this. I can also tell her I am willing to pay for the tests myself. I wonder how much should I expect if my insurance company nays it?

[GFinDC]

Hi Scared,

 

You can call Quest Diagnostics and ask them about testing.  You don't need a doctor's permission to sue their testing service.  But you would need to go to an office to have the blood drawn.  There are other testing services but I don't remember their names right now.

 

You might ask the doctor why there is gut atrophy ?  There has to be a reason for it.  If he says it is not celiac disease he should be testing you for the other possible causes.  The current recommendation for celiac biopsies is 6 to 8 biopsy samples.

 

The problem with waiting till later for the testing is you would need to do a gluten challenge and that can be very unpleasant.  Of course you don't have to be diagnosed by a doctor to eat gluten-free.  Anyone is free to choose to eat what they want without a dr's permission slip.  It's just if you are definitely wanting a diagnosis it is much better to do that testing now rather than later.

 

Quest Diagnostics

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[GottaSki]

You should explain to your primary exactly what has happened.  That the GI found atrophy but felt it was not celiac based on the single biopsy.  You are planning to remove gluten to determine if there is an issue with gluten whether it be Celiac or NCGS.  Based on information from the major Celiac Centers (UoC, Univ of Maryland, UCSD and many more) you understand that it is well advised to have the celiac antibody panel before removing gluten because the tests become invalid once gluten is removed..... if there is improvement gluten-free it will leave you in limbo without an official diagnosis.

 

If your primary refuses a reasonable request, you can have the tests done privately...last I checked there was a panel available for about $200 OR simply go gluten-free with the understanding you may have unanswered questions regarding your status. 

 

Understand...my opinion is based on interaction with many people that were completely frustrated by removing gluten before the antibody tests.  There are also people that are quite happy living gluten-free without diagnosis.

[NoGlutenCooties]

I'm sure lab costs vary - and I live in New Jersey where everything is way more expensive than it should be - but my Celiac panel of blood tests were billed at over $900 (I forget now how much the insurance company paid).  So you'd definitely want to check on the price ahead of time.

[GottaSki]

Yes....my tests are much more expensive when ordered by doctor and billed to insurance.

 

The $200 panel is what I found when I researched alternatives to obtaining doctor's orders.

 

I think it was from USHealthCheck...which utilizes a network of labs nationwide.  

 

Edited to add:

 

Just checked...current price even lower than back when I found them - $180

 

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[Justscared]

I asked my GI and he said it was extremely little what he thought he saw during the endoscopy, so he biopsied it to make sure. The biopsy came back fine so for him the case is closed. 

 

If the blood panels also come back fine, can I conclude without the shadow of a doubt that I do not have either Celiac or NC-gluten sensitivity?

 

I will ask my GP about the blood tests.

 

 

 

You might ask the doctor why there is gut atrophy ?  There has to be a reason for it.  If he says it is not celiac disease he should be testing you for the other possible causes.  The current recommendation for celiac biopsies is 6 to 8 biopsy samples.

 

 

 

Quest Diagnostics

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[cyclinglady]

If both tests are negative, you can NOT be assured that you do not have NCGI! Some people do not have intestinal damage, but the feel better on a gluten-free diet that relieves them of many symptoms. There is no test to diagnose (dx) NCGI. Only strictly adhering to the diet for six to nine months will help you and your doctor make the NCGI dx.

Beyond a shadow of a doubt does not apply to anything related to health!

[cyclinglady]

I'm sure lab costs vary - and I live in New Jersey where everything is way more expensive than it should be - but my Celiac panel of blood tests were billed at over $900 (I forget now how much the insurance company paid).  So you'd definitely want to check on the price ahead of time.

That is why our Heath care system is so messed up! Well, one of the reasons. Labs typically charge much less if you are paying cash.

[Justscared]

If both tests are negative, you can NOT be assured that you do not have NCGI! Some people do not have intestinal damage, but the feel better on a gluten-free diet that relieves them of many symptoms. There is no test to diagnose (dx) NCGI. Only strictly adhering to the diet for six to nine months will help you and your doctor make the NCGI dx.

Beyond a shadow of a doubt does not apply to anything related to health!

 

In that case, what would be the role of the blood tests?

If they come out negative, I would still have to do the 6 months gluten-free trial, if I understand correctly.

 

Then why have them at all? Shouldn't I just go ahead with the gluten-free diet?

 

Let's just also take the scenario where someone has negative blood tests and negative biopsy but embarks on a gluten-free diet for 6 months anyway. During this time, they would likely eat better than before because they would eat more whole foods, less processed foods, etc. Generally, when people embark on a health-related diet of any sort they start eating better most of the times.

 

As a result of these changes, the person in question decides that she feels much better after the 6 months of dietary changes. As such, she concludes she MUST have gluten sensitivity even though there is no direct proof that it was the elimination of gluten that did it.

It could have been that the overall better diet contributed to an overall better health and energy level - yet the person in question would never know, and she would decide that she would have to avoid gluten for the rest of her days.

 

This would not necessarily be a tragedy, but I CAN see how it can be a major dent in quality of life for those people who believe they have "it" when in reality they don't - especially if it is believed that gluten-sensitive people don't just have to "avoid" gluten as much as possible, but to be as religious in eliminating it as the Celiacs themselves (as in "not even cross-contamination allowed).

 

I have only done a total of 4 days of gluten-free so far (2 days a few weeks ago and 2 days this week) and I can already see how the constant fear of cross-contamination or even the smallest amounts sneaking in one's food - can affect someone's life terribly.

This constant fear is quite un-necessary if the disease is not there .  

 

Does anyone know what happens to NCGS people who only "avoid" gluten as often as possible as opposed to "eliminating it religiously"?

Are even very small quantities harmful as in the case of full-blown Celiacs?

 

Thank you for any nuanced info!

[GottaSki]

You have repeatedly demonstrated and admitted to the unknown causing great anxiety.  

 

We have explained that once you remove gluten you lose the best opportunity for accurate testing.

 

There is nothing wrong with moving on to removing gluten...if you choose this route...fantastic, but do it with the understanding that if your health improves you may decide you want to know whether you have Celiac Disease or Non-Celiac Gluten Sensitivity and become frustrated once again.

 

Those with NCGS need to be just as careful as those with Celiac Disease.

[cyclinglady]

I do not have much time but my husband is gluten-free, overweight and out of shape. He has been gluten-free for 13 years. He consumes ice cream, cupcakes, cookies, chips, candy besides the heathy foods that I push. Going gluten-free does not mean that you will eat healthy whole foods! He did get rid of his gluten-free symptoms: snoring, sinus infections, gas, body aches etc. If he gets accidentally glutened, he feel bad (me too!)

The blood test is for your piece of mind. It did not sound like your GI did lots of biopsies. But you can skip this step ( your doc seems to want to do this) and go gluten-free. My husband has had no formal testing. I did. It does make it easier to have a formal dx when getting support from family etc.

My husband cheated a lot his first year. He ate gluten and he got sick. If you have NCGI, I suspect if you eat gluten you will feel sick.

[Justscared]

I do not have much time but my husband is gluten-free, overweight and out of shape. He has been gluten-free for 13 years. He consumes ice cream, cupcakes, cookies, chips, candy besides the heathy foods that I push. Going gluten-free does not mean that you will eat healthy whole foods! He did get rid of his gluten-free symptoms: snoring, sinus infections, gas, body aches etc. If he gets accidentally glutened, he feel bad (me too!)

The blood test is for your piece of mind. It did not sound like your GI did lots of biopsies. But you can skip this step ( your doc seems to want to do this) and go gluten-free. My husband has had no formal testing. I did. It does make it easier to have a formal dx when getting support from family etc.

My husband cheated a lot his first year. He ate gluten and he got sick. If you have NCGI, I suspect if you eat gluten you will feel sick.

I have already contacted my GP via the health records system they have online but I will also call her to request the blood panel over the phone. Their office was closed today because of snow and bad driving conditions. So I will try to get those blood tests anyway, for peace of mind.

This process seems so frustrating that I think a genetic test that could confirm the lack of a gene would be amazing, because that one really should be beyond the shadow of a doubt. I just don't think how I could get genetic testing ordered. A this point, it would be worth it, speaking of peace of mind.

There seems to be too much uncertainty involved for a condition that requires Nazi-like avoidance of a substance that is pretty much everywhere. As I assume most Celiacs or NCGS cannot guarantee the complete avoidance of even microscopic traces of gluten for the rest of their days, I wonder what happens to them when they do get contaminated.

Getting some symptoms back and feeling sick for the moment is one thing; having inflammation and damage triggered in the body again and further increasing the odds of terrible diseases like lymphoma - is another.

It is still not clear to me what is the level of gravity of the situation when a celiac who is generally on a gluten-free diet gets contaminated accidentally. What about for a NCGS ?

[nvsmom]

It is still not clear to me what is the level of gravity of the situation when a celiac who is generally on a gluten-free diet gets contaminated accidentally. What about for a NCGS ?

 

For both disorders, being glutened sets your health back a few weeks to a month - generally. Obvious symptoms may only last a few days (stomach ache or headache) but others can last a while (arthritis, hair loss). There is also the possibility of increased inflammation which can contribute to other health problems.

 

Once you have been eating gluten-free for a few months, it really isn't that hard. It's similar to people who have food allergies like nuts, eggs, or milk; you just get used to reading labels - it could be much worse. I personally find the only time my celiac disease is a hassle is when I am eating out and I can't bring my own food.

 

It isn't that hard. I haven't been glutened in about a year.  

[notme]

 

 full-blown Celiacs?

 

lolz - what? 

 

"it's not the h.i.v.,,,,"

 

sorry, i watch too many cartoons......... 

[Justscared]

lolz - what? 

 

"it's not the h.i.v.,,,,"

 

sorry, i watch too many cartoons......... 

 

I meant "CELIACS-CELIACS". :-) As in not just "gluten sensitive". Those with flattened villi on the biopsy, positive blood tests, etc.

[nvsmom]

I meant "CELIACS-CELIACS". :-) As in not just "gluten sensitive". Those with flattened villi on the biopsy, positive blood tests, etc.

LOL

Those with a gluten sensitivity can be divided into two groups:

1. Celiac disease - have tonnes of nasty symptoms and villi damage, some have dh (BTW, celiacs are people who have celiac or celiac disease)
2. Non-celiac gluten intolerance/ sensitivity (NCGI or NCGS - terms are interchangeable) - haves tonnes of nasty symptoms. No villi damage or dh.

[IrishHeart]

Making this a lot more complicated than it has to be. Let's cut to the chase. 

Everyone who has posted has given you rock- solid advice, but maybe if we summarize it....

 

(1) Have the celiac blood panel done now while you are consuming gluten because you actually can have Celiac without villous damage YET

and be positive on blood panels.

 

(2) Have the genetic test done. If it is positive for either of the genes associated (but NOT predictive of) celiac, it would give you more info.

 

OR

 

(3) Forget all that and just go G F and see if it helps. It's not the end of the world to dump gluten.

None of us are hungry and feeling deprived, I assure you. 

 

You obviously have symptoms that are indicative of  gluten intolerance and to be perfectly frank, you are driving yourself insane speculating endlessly and thinking all the worse case scenarios without enough information. This is unwise, hon.

 

And,you are not "pathetic" as you say Kindly help me, as I suffer from severe health anxiety (hypochondria) and for me, words like "acid reflux" spell "esophageal cancer in the future"; and Celiac spells "lymphoma in the future". 

 

I know I am pathetic - and this is why I am here begging for help. :-(

 

BUT you are "borrowing trouble" as my Gramma used to say and that's a waste of time and energy.

 

Since you raised the word "hypochondria" you should be aware that it is  one of the behavioral issues tied to gluten sensitivity.

 

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• Anxiety
• Apathy
• Bipolar disorder
• Depression
• Difficulty Making Friendships
• Easy Frustration and Anger
• Nervousness
• Panic Attacks
• Sense of Worthlessness
• Overly Self-critical
• Hysteria
• Hypochondria

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My best advice, IMHO...

make a decision and follow through with it and get out of the endless cycle of worrying what may or may not happen.

Best wishes.

[Justscared]

Thanks everyone again. Just wanted to write an update -  my GP ordered the panel, so I had blood drawn this morning after eating cake and other gluetened things all week-end.

Now I will just be waiting ...it may take up to 2 weeks, but they said probably not that long.

 

Keep praying my GI was right - as he did not even want to do the blood panels.

 

 

 

Making this a lot more complicated than it has to be. Let's cut to the chase. 

Everyone who has posted has given you rock- solid advice, but maybe if we summarize it....

 

(1) Have the celiac blood panel done now while you are consuming gluten because you actually can have Celiac without villous damage YET

and be positive on blood panels.

 

(2) Have the genetic test done. If it is positive for either of the genes associated (but NOT predictive of) celiac, it would give you more info.

 

OR

 

(3) Forget all that and just go G F and see if it helps. It's not the end of the world to dump gluten.

None of us are hungry and feeling deprived, I assure you. 

 

You obviously have symptoms that are indicative of  gluten intolerance and to be perfectly frank, you are driving yourself insane speculating endlessly and thinking all the worse case scenarios without enough information. This is unwise, hon.

 

And,you are not "pathetic" as you say Kindly help me, as I suffer from severe health anxiety (hypochondria) and for me, words like "acid reflux" spell "esophageal cancer in the future"; and Celiac spells "lymphoma in the future". 

 

I know I am pathetic - and this is why I am here begging for help. :-(

 

BUT you are "borrowing trouble" as my Gramma used to say and that's a waste of time and energy.

 

Since you raised the word "hypochondria" you should be aware that it is  one of the behavioral issues tied to gluten sensitivity.

 

Open Original Shared Link

• Anxiety
• Apathy
• Bipolar disorder
• Depression
• Difficulty Making Friendships
• Easy Frustration and Anger
• Nervousness
• Panic Attacks
• Sense of Worthlessness
• Overly Self-critical
• Hysteria
• Hypochondria

Open Original Shared Link

 

My best advice, IMHO...

make a decision and follow through with it and get out of the endless cycle of worrying what may or may not happen.

Best wishes.

[1desperateladysaved]

The final gold standard test (after antibodies) is to go 100% gluten free and see how it goes.  Keep track of symptoms to describe what happened to a doctor later if needed.  Endoscopy's sometime miss damage.  I also believe checking some nutrient levels could help determine how your digestion is working.  Vitamin B, iron, vitamin D, and magnesium might be low if the villi are damaged or you have celiac. 

 

D