Biopsy Results Inconclusive; Early Celiac, Sibo, Something Else?

[NotMollyRingwald]

Just got the word from my GI – the biopsy results are inconclusive.  I don’t have a copy of the report yet, but my doc explained there was a small amount of damage to my villi.  However, it was not full villus atrophy as would be expected from a full blown Celiac.   He believes the damage could be from “early Celiac disease” or it could be the result of a severe gastrointestinal virus (I had a nasty stomach bug last Christmas).   Given my significant positive improvement on a gluten-free diet, he leans towards the early Celiac theory, but doesn’t want to official diagnose that at this point as my blood work (tTg IgA) was negative (8 with 1-10 being normal).   He doesn’t want to exclude Celiac at this point either, as I was 6 weeks gluten-free at the time of the blood work and it’s possible my tTg would have been higher before going gluten-free.   ARRRRRRGH.   Anyone have a time machine that I could use to go back to February and see a doctor BEFORE going gluten-free??  *Sigh*

 

So, we also discussed options.  1) take the gene test and hope it is negative (so we could positively rule out Celiac),  2) treat as Celiac/NCGI and go along my merry way on the gluten-free diet (complete with a referral to the hospital dietician), 3) go back to eating gluten for EIGHT MORE WEEKS and run a full panel of bloodwork again in August.

 

So here’s the thing.  If I have Celiac, I want my son to be tested.  When it comes down to it, the diagnosis/ruling out of Celiac is only important to me for that reason.  I already know gluten is poison to my system…the gluten challenge proved that beyond a doubt.  I can’t go through another 2 weeks (much less *8* weeks) of gluten hell.  I just can’t do it.     So, I opted for #1 & #2.  Hopefully, the gene test is negative & Celiac is ruled out.  If it’s positive, well, I guess I cross that bridge when/if I come to it.  (Sidenote: if this is what “early” Celiac is like, I cannot imagine the misery so many of you endured when eating gluten!!!)

So, long story even longer, I’m wondering about the possibility of the villi damage being done by a stomach virus/SIBO/lingering stomach virus.  The GI originally planned to take a sample to test for SIBO during the EGD, but wasn't able to (the only tube they had for the procedure is made of latex, I'm allergic).  He mentioned a breath test as an alternative, but doesn't feel like that is a strong option at this point.  Thoughts?  Any insight?

 

Once again, I am so appreciative of you all - the opinion of those who have been- there-done-that- and-should-have-a-medical-degree-from-the-experience is HIGHLY valued by this girl!!

 

 

[Celiac Mindwarp]

Hi Amy

How frustrating for you. It sounds to me like you have the right approach, gluten-free plus gene test.

I did this, but managed to sneak a celiac blood test for my son before I got my negative gene test. His results were negative.

I am now gluten-free, and keeping a close eye on my son. Maybe you could persuade the doctors to test him, then try him gluten-free if you have any specific concerns right now.

In good news, now you have decided to go gluten-free, you can start your recovery.

Looks like welcome to the NCGI club (though I suspect that in a few years the tests will catch up with the spectrum nature of the condition that specialists are starting to describe, and that 'early celiac' will make a whole lot more sense).

[GottaSki]

So frustrating....

 

First -- not having the two genes generally tested for can NOT rule out Celiac Disease -- although my guess is you are carrying them.

 

Second -- request a written or electronic copy of both the procedural report AND the pathology report and let us chime in if you feel comfortable to do so.

 

Third -- the most important factor is your improvement gluten-free

 

Hang in there!

[1desperateladysaved]

Hi Amy,

 

Other reasons for villi problems are possible.  One of my sons had Giarrdia which damage the villi.  This is a parasite.

 

Still with your improvement gluten free;  you probably conclude that gluten free is the way for you to go.

 

Diana

[IrishHeart]

I think you have celiac--they can call it "early" if they want, but does that equate to "early stages of pregnancy"? It's still  a done deal. I can link you to what celaic experts say about "early celiac" if you want.

 

You do not want to know what "late stage celiac" is. It is dead woman walking ugly.

 

I want to know what the MARSH scale says?? (ask him to tell you this)

Like SKI says...get the PATH report.

 

While other conditions may cause villous atrophy, your improvement on the gluten-free diet is the key!!.

If it were something else,  you would not  feel better off gluten because the underlying condition would still be present. See what I mean?

 

I know,  I am not a doctor ....but when it quacks like a duck and walks like a duck, it's a flippin duck.

 

I suggest have the doc order the gene test. And why can't he run the SIBO test???

 

You know you are not eating gluten ever again (that is a given) and whatever you do from here regarding your son, is entirely up to you

and who gives a flying fig if you call yourself NCGI or celiac. Gluten is poison to you. 

 

IMHO as always. I admire you for sticking it out on the gluten challenge. You're a trooper, honey!!

[Deaminated Marcus]

Hi Amy

 

Here is a link to other causes of villi damage:

 

Open Original Shared Link

 

 

If you are still eating gluten or want to continue eating gluten for a few more weeks, you could do the DGP-IgG.

 

I think you should test your son as well if he's eating gluten with the same  DGP-IgG test.

[IrishHeart]

Hi Amy

 

Here is a link to other causes of villi damage:

 

Open Original Shared Link

 

 

If you are still eating gluten or want to continue eating gluten for a few more weeks, you could do the DGP-IgG.

 

I think you should test your son as well if he's eating gluten with the same  DGP-IgG test.

 

 

She said she is done eating gluten and feels better and does not want to continue. She had a horrible time with the gluten challenge.

 

  I can’t go through another 2 weeks (much less *8* weeks) of gluten hell.  I just can’t do it.  

[NotMollyRingwald]

I am now gluten-free, and keeping a close eye on my son. Maybe you could persuade the doctors to test him, then try him gluten-free if you have any specific concerns right now.

In good news, now you have decided to go gluten-free, you can start your recovery.

 

I have considered asking his Ped to test him, regardless.  He doesn't have classic Celiac symptoms, (nor do I) but does have there are a few things (e.g. frequent bouts of constipation, bloated stomach, sleep disturbances).  I think the biggest hurdle here is my husband "it's just normal kids stuff." UGH. 

 

And you are absolutely right, getting back to gluten free has already improvement in my symptoms (headache gone, tad more energy, fog lifting).  I am so excited to see what life will be like fully recovered! 

 

So frustrating....

 

First -- not having the two genes generally tested for can NOT rule out Celiac Disease -- although my guess is you are carrying them.

 

Second -- request a written or electronic copy of both the procedural report AND the pathology report and let us chime in if you feel comfortable to do so.

 

Third -- the most important factor is your improvement gluten-free

Hang in there!

1st -  Well that's disappointing. Should I check with him on certain genes before I go get my blood drawn?

2nd - Will do. Absolutely.

3rd - You are 100% correct.     

 

Hi Amy,

 

Other reasons for villi problems are possible.  One of my sons had Giarrdia which damage the villi.  This is a parasite.

 

Still with your improvement gluten free;  you probably conclude that gluten free is the way for you to go.

 

Diana

Diana - Parasite?! Yikes.  If you don't mind my asking, what symptoms did your son have?  

 

Regardless, gluten free *is* the way to go, no dobut...but the thought just occurred to me that there could be more than one thing going on.  

 

I think you have celiac--they can call it "early" if they want, but does that equate to "early stages of pregnancy"? It's still  a done deal. I can link you to what celaic experts say about "early celiac" if you want.

 

You do not want to know what "late stage celiac" is. It is dead woman walking ugly.

 

I want to know what the MARSH scale says?? (ask him to tell you this)

Like SKI says...get the PATH report.

 

While other conditions may cause villous atrophy, your improvement on the gluten-free diet is the key!!.

If it were something else,  you would not  feel better off gluten because the underlying condition would still be present. See what I mean?

 

I know,  I am not a doctor ....but when it quacks like a duck and walks like a duck, it's a flippin duck.

 

I suggest have the doc order the gene test. And why can't he run the SIBO test???

 

You know you are not eating gluten ever again (that is a given) and whatever you do from here regarding your son, is entirely up to you

and who gives a flying fig if you call yourself NCGI or celiac. Gluten is poison to you. 

 

IMHO as always. I admire you for sticking it out on the gluten challenge. You're a trooper, honey!!

 

All very good points and input, Irish, thanks.  I will ask him about the MARSH scale next time we talk!  LOL at the duck comment!  I don't think I asked him specifically (errrrrrr...memory fail) to explain his reasoning for forgoing the breath test, but I got the impression he doesn't think SIBO is my issue. I think if I called and told him I want to do it anyway, he'd order...think I should do that?

[1desperateladysaved]

 

Diana - Parasite?! Yikes.  If you don't mind my asking, what symptoms did your son have?  

 

Failure to grow (off the chart in weight and height)  at 9 years.

Chronic infection in ear.  (This may have lowered resistance rather than been due to the parasite)

Ferocious appetite!

Diarrhea would be a symptom, but he didn't have it..

 

He ended up needing two rounds of antibiotics then a course of herbal anti-parasite, Then an anti-fungal along with probiotics to combat a yeast infection realized in the treatment. 

 

He didn't start growing until he also had a round of glutamine and began to use digestive enzymes.  Now, he is growing rapidly!  Two and 1/2 inches in 3 months at last count.

 

Giarrdia are found in some US water supplies.  Thankfully, the rest of the family didn't get it.

 

Diana

 

 

[GottaSki]

 

 

1st -  Well that's disappointing. Should I check with him on certain genes before I go get my blood drawn?

2nd - Will do. Absolutely.

3rd - You are 100% correct.     

 

 

Was set to come back and answer...then saw a similar thread that you might want to read....

 

https://www.celiac.com/forums/topic/102004-opt-for-genetic-test/?p=870894

 

ps...thanks ravenwoodglass

[gatita]

Was set to come back and answer...then saw a similar thread that you might want to read....

 

https://www.celiac.com/forums/topic/102004-opt-for-genetic-test/?p=870894

 

ps...thanks ravenwoodglass

 

 

Yup, this is true.

 

After all, "they" say the DQ2 and DQ8 are found in around 97 percent of celiacs. So what genes do the other three percent have? And there are two reputable studies linking DQ9 (which I have) to celiac.

 

So while doctors like to say a negative gene test is definitive, it ain't.

[NotMollyRingwald]

Yup, this is true.

After all, "they" say the DQ2 and DQ8 are found in around 97 percent of celiacs. So what genes do the other three percent have? And there are two reputable studies linking DQ9 (which I have) to celiac.

So while doctors like to say a negative gene test is definitive, it ain't.

Ugh. This kinda makes me want to bang my head against a hard object. LOL

If they cant rule out Celiac and the SIBO tests are only 60% accurate and no reliable testing exists for other intolerances (e.g. Lactose), the only real viable option to determine what the heck is wrong with me is __________? Elimination diet? Give gluten-free/DF a shot and reassess after 3 mo? Rubber room with a special white jacket??

[foam]

If your Doctor will run you through a diagnostic course of Rifiamixin or even metronidazole you'll soon find out if it's sibo or even a small parasite. I'd take the gene test if I was you anyway. Chances are it'll be positive, if gluten makes you very sick it basically has to be positive. Those two things will help you understand what is going on if nothing else. I have a son due within weeks and I'm just not going to give him any gluten until I see proof he hasn't inherited DQ2 from me.

 

I had a burning gut for years, most my other gut problems went away off gluten but the ever present burn never did. I did 6 days of metronidazole a couple of months ago and have had no burning since

[Celiac Mindwarp]

Not sure I agree that it has to be positive if gluten makes you sick. I got a negative and gluten ain't my friend

I found an elimination diet incredibly useful, along with a food diary.

I had terrible problems with sugar, including fruit, and thought I might have SIBO, but I can now handle a bit of fruit every day. It is 5 months since I started my elimination. I feel better than I have for 20 years, and have a long list of intolerances. I reckon some will come back in time.

Mw x

[IrishHeart]

Not sure I agree that it has to be positive if gluten makes you sick. I got a negative and gluten ain't my friend

I found an elimination diet incredibly useful, along with a food diary.

I had terrible problems with sugar, including fruit, and thought I might have SIBO, but I can now handle a bit of fruit every day. It is 5 months since I started my elimination. I feel better than I have for 20 years, and have a long list of intolerances. I reckon some will come back in time.

Mw x

 

 

EXACTLY!!!!  well said, MW.

 

Gene tests are not the" be all, end all" They are not "diagnostic" of celiac either. Many people have the genes, but never trigger with celiac.

 

In the end, you are the only one who can determine what's best. If gluten makes you sick,well......... DO NOT EAT IT.

 

Eggs make me sick (not baked  IN things, just eggs baked, fried, or boiled) so I do not eat them. 

Soy makes me sick, so I do not eat any soy.

 

No one needs "permission" to go gluten-free. 

[NotMollyRingwald]

No one needs "permission" to go gluten-free.

Thank the good Lord for that!

[NotMollyRingwald]

If your Doctor will run you through a diagnostic course of Rifiamixin or even metronidazole you'll soon find out if it's sibo or even a small parasite. I'd take the gene test if I was you anyway. Chances are it'll be positive, if gluten makes you very sick it basically has to be positive. Those two things will help you understand what is going on if nothing else. I have a son due within weeks and I'm just not going to give him any gluten until I see proof he hasn't inherited DQ2 from me.

I had a burning gut for years, most my other gut problems went away off gluten but the ever present burn never did. I did 6 days of metronidazole a couple of months ago and have had no burning since

Will def keep this in mind! Admittedly, I wouldn't opt to try antibiotics w/o reasonable suspicion of SIBO (am allergic to several and they make me nervous), but if it needs doing, it needs doing!

[taynichaf]

How long were you gluten free prior to the challenge? How long was your challenge? Maybe it was too short, so that's why your results were inconclusive.

[NotMollyRingwald]

How long were you gluten free prior to the challenge? How long was your challenge? Maybe it was too short, so that's why your results were inconclusive.

I was gluten-free 6 weeks before the blood work, and 8 weeks total before the challenge started. I suppose it's possible that my 4 weeks back on gluten weren't long enough to redo the damage undone by 8 weeks of healing, especially since I was "gluten light" prior to going gluten free for about a year...so many "ifs" and "buts" and "maybes" in my situation. One thing is for sure, that challenge was 4 weeks of hell, and, at this moment, I have no doubt that Celiac or NCGI is to blame. Luckily, I don't *need* a diagnosis for school/work/etc at this point. And I did decide to talk to my son's pediatrician at his next well check. Hopefully she is willing to run the Celiac panel if only for my piece of mind.

[taynichaf]

I was gluten-free 6 weeks before the blood work, and 8 weeks total before the challenge started. I suppose it's possible that my 4 weeks back on gluten weren't long enough to redo the damage undone by 8 weeks of healing, especially since I was "gluten light" prior to going gluten free for about a year...so many "ifs" and "buts" and "maybes" in my situation. One thing is for sure, that challenge was 4 weeks of hell, and, at this moment, I have no doubt that Celiac or NCGI is to blame. Luckily, I don't *need* a diagnosis for school/work/etc at this point. And I did decide to talk to my son's pediatrician at his next well check. Hopefully she is willing to run the Celiac panel if only for my piece of mind.

As long as your happier gluten free!

 

Ohh.. She better run the tests! I would be so angry if she didn't!