Gastroenterologist says they've never seen a case like mine...looking for help

[AllisonMcM]

Hi All,

After mild symptoms like worsening gastritis, stomach cramps and loose/more frequent stools, my blood was tested in late May 2018 (only IGA serum, TTG IGA and EMA). IGA serum was normal, EMA was negative but TTG IGA was positive (3X normal limit). I was referred to a gastroenterologist for a consult and endoscopy. Gastroenterologist tested DGP IGA and IGG - DGP IGG was 4X normal limit, DGP IGA was normal. In the consult, gastro doc told me she was certain I had celiac as all my symptoms, including occasional night sweats and random nausea, fit. I had endoscopy and 6 biopsies were taken from my small intestine and duodenum - all came back negative. My gastro doc says that she has never had a patient with positive serology but negative biopsies, which according to this forum is not all that uncommon, and she doesn't know what to tell me. 

I understand that the biopsies could have missed the damage. However, I have been gluten-free for two months exactly and I feel little to no improvement. I have been strict about cross-contamination (though I eat out a few times a week which is always risky) and I've made a few mistakes -my boyfriend and I shared a tube of toothpaste until last week when I realized it could be CCing me. But I don't feel like I'm fine and then sick when I get glutened. I feel like literally nothing has changed since going gluten-free.

My gastro doc told me that, given my negative biopsies and poor response to the diet, that she does not think I have Celiac disease. She can give me no answers for why my ttg iga was 3X the normal limit and dgp igg was 4X the normal limit. She literally shrugged her shoulders when I asked her why they could be that high if I did not have Celiac.

I'm incredibly frustrated. My plan until today was to be strictly gluten-free until January (6 month mark) and then have my blood retested and see if the levels have dropped. Now, I'm not even sure if that will tell me definitively if I have it so I'm tempted to have my blood retested now and then just start eating gluten again and see if I feel worse. And if I don't, just keep eating it and go back to my previous normal life.

I'm wondering what all of you would do if you were me: if you were told you didn't have Celiac but were worried about elevated blood levels? Working hard to be gluten-free and seeing/feeling zero results. Would you give it more time? Retest blood now? I'm at a loss and my doctor is providing no support.

I appreciate your thoughts!

Allison

[Ennis-TX]

You say strict, but you eat out and probably get CCed each time...my symptoms peak in 24 hours of exposure then 2-5 days of issues mostly nerve and psychological followed by about 6+ weeks of random diarrhea til my antibodies start to go down. But everyone is different...I have to really up my intake of B-vitamins, vitamin D, and magnesium after a exposure I get down right depressive, mood swings, to suicidal (this is new I used to just get confused and anger)

Your probably resetting the clock with each exposure...and it can take up to 24 months for your intestines to heal, 6 months you should start to notice a lot of differences if your gluten free.

Few things to consider, does your BF eat gluten? Do you kiss him within 24 hours of him eating gluten?
Do any of your hair products, lotions, bodywash contain gluten? Think about it you touch you hair, body etc then touch your food...oops.
Do you go anywhere or work somewhere like a bakery where airborne flour can be inhaled? Well it can get trapped the mucus in your throat, and you eventually swallow it. OH and flour can be airborne for 24+ hours.
Did you throw out your cutting boards, scratched pots etc?

NOTE I am going on the assumption they missed your damage and your celiac.

[AllisonMcM]

1 hour ago, Ennis_TX said:

You say strict, but you eat out and probably get CCed each time...my symptoms peak in 24 hours of exposure then 2-5 days of issues mostly nerve and psychological followed by about 6+ weeks of random diarrhea til my antibodies start to go down. But everyone is different...I have to really up my intake of B-vitamins, vitamin D, and magnesium after a exposure I get down right depressive, mood swings, to suicidal (this is new I used to just get confused and anger)

Your probably resetting the clock with each exposure...and it can take up to 24 months for your intestines to heal, 6 months you should start to notice a lot of differences if your gluten free.

Few things to consider, does your BF eat gluten? Do you kiss him within 24 hours of him eating gluten?
Do any of your hair products, lotions, bodywash contain gluten? Think about it you touch you hair, body etc then touch your food...oops.
Do you go anywhere or work somewhere like a bakery where airborne flour can be inhaled? Well it can get trapped the mucus in your throat, and you eventually swallow it. OH and flour can be airborne for 24+ hours.
Did you throw out your cutting boards, scratched pots etc?

NOTE I am going on the assumption they missed your damage and your celiac.

Hi Ennis,

Thanks for your response. Even if I am getting glutened from kissing my boyfriend and eating out, wouldn't I most likely feel some kind of improvement, seeing as I went from lots of gluten at every meal to trying to eliminate it completely? It seems like I would notice some difference, even if I continued to have symptoms sometimes. I've really noticed nothing. Also, can celiacs never kiss their gluten-eating partners without getting sick? That seems pretty extreme. And I do vet the restaurants we go to in terms of knowledge about celiac disease and I am careful to ask questions about ingredients, handling, not putting gluten-free bread in the toaster, etc. I really appreciate you sharing your thoughts - just trying to get to the bottom of this! My concern now is that it's not celiac and it's something else raising my blood levels...

 

And yes, we got rid of all cutting boards, pans, plastic measuring spoons, pots that were not stainless steel and I have checked all my hair products and lotions. 

[tessa25]

48 minutes ago, AllisonMcM said:

Even if I am getting glutened from kissing my boyfriend and eating out, wouldn't I most likely feel some kind of improvement, seeing as I went from lots of gluten at every meal to trying to eliminate it completely?

Every time you get glutened it can take a few months for things to settle down. Since your symptoms never got better there is nothing different to feel when you get glutened. But I'm not a doc so I can't say it isn't something else.

I noticed no improvement whatsoever for 6 months.

In your position I would try strict gluten free for a few months. No processed food, no restaurants, bf needs to brush teeth when seeing you.

[ravenwoodglass]

1 hour ago, AllisonMcM said:

 Even if I am getting glutened from kissing my boyfriend and eating out, wouldn't I most likely feel some kind of improvement, seeing as I went from lots of gluten at every meal to trying to eliminate it completely?

No you wouldn't. It is not the amount of gluten you are getting that is controling the symptoms it is the antibody reaction going on that is causing the problem. With all the risks you have been taking your antibodies have not had the chance to clear. You need to stop eating out for a bit and do encourage your BF to brush is teeth before any kissing. If you need help with recipes or cooking tips many here will be glad to help.

If you had high positives on your blood work you have celiac. Your damage could be patchy or in an area that the scope can't reach. Please do not think you are not celiac because of the negative scope.

[AllisonMcM]

14 minutes ago, ravenwoodglass said:

If you had high positives on your blood work you have celiac. Your damage could be patchy or in an area that the scope can't reach. Please do not think you are not celiac because of the negative scope.

Are my numbers considered high positive, in your opinion?

 

Thanks for your response!!

42 minutes ago, tessa25 said:

Every time you get glutened it can take a few months for things to settle down. Since your symptoms never got better there is nothing different to feel when you get glutened. But I'm not a doc so I can't say it isn't something else.

I noticed no improvement whatsoever for 6 months.

In your position I would try strict gluten free for a few months. No processed food, no restaurants, bf needs to brush teeth when seeing you.

Thank you! Seeing as his toothbrush contains gluten, would drinking water before seeing me be better?

[squirmingitch]

Big Question

Did you "go gluten free" prior to the endoscopy?

Boyfriend needs to brush well before you guys kiss. Drinking water will not do a thing to get rid of gluten. If he brushes well & rinses his brush well you will be safe.

Your numbers were high positive, yes.

[ravenwoodglass]

1 hour ago, AllisonMcM said:

Are my numbers considered high positive, in your opinion?

 

Thanks for your response!!

Thank you! Seeing as his toothbrush contains gluten, would drinking water before seeing me be better?

I would consider 3x and 4 x high and the DGP is quite specific to celiac.

Do stick with the tooth brushing as that will remove any gluteny residue in his mouth.  Swishing some water and spitting it out after brushing would be a good idea. Just drinking water wouldn't cut it. Do be sure to do the tooth brushing if he drinks any gluten beverages like beer or malt liquor also.

There is a lot to get used to with being diagnosed both for us and our loved ones. While it isn't easy to stay safe it is doable. I hope you are able to heal quickly.

[AllisonMcM]

10 minutes ago, ravenwoodglass said:

I would consider 3x and 4 x high and the DGP is quite specific to celiac.

Do stick with the tooth brushing as that will remove any gluteny residue in his mouth.  Swishing some water and spitting it out after brushing would be a good idea. Just drinking water wouldn't cut it. Do be sure to do the tooth brushing if he drinks any gluten beverages like beer or malt liquor also.

There is a lot to get used to with being diagnosed both for us and our loved ones. While it isn't easy to stay safe it is doable. I hope you are able to heal quickly.

Thank you, I appreciate it.

[cyclinglady]

Getting a firm celiac disease diagnosis can be very frustrating.  With elevated blood test results and symptoms, chances are you do have celiac disease.  My niece was diagnosed with Crohn’s after seeing four different GIs.  Her Crohn’s did not present normally.  Her damage was beyond the reach of both scopes and her symptoms did not even match the “normal” symptoms of Crohn’s.  Her damage, which turned out to be severe,  was discovered through a pill camera which almost got stuck!  

Buckle down on the diet and do not eat out until you feel great.  Hard to do, but most of us have come to realize that health trumps feeling poorly.  Not to mention that most of us realize that had we been diagnosed sooner, we might have avoided developing additional AI issues that can not be so easily treated.  

I was diagnosed five years ago.  My hubby went gluten free 18 years ago per the poor advice of two doctors.  Does he have celiac disease?  We do not know.  He refuses to do the challenge.  Why. Because he is well.  That is proof enough for him to stay on in the gluten-free diet.  

 

[AllisonMcM]

On 9/13/2018 at 4:48 PM, squirmingitch said:

Big Question

Did you "go gluten free" prior to the endoscopy?

Boyfriend needs to brush well before you guys kiss. Drinking water will not do a thing to get rid of gluten. If he brushes well & rinses his brush well you will be safe.

Your numbers were high positive, yes.

Hi there - no I did not go gluten free until after the endoscopy.

[kviolin]

You could request a capsule endoscopy. This will give a view of the entire small intestine. My initial endoscopy biopsies were negative. With the capsule endoscopy, the doctor was able to see extensive celiac damage that was out of the range of the scope. This was done after being gluten free for two months and it was still very evident. Symptom wise, I did not have improvement until 3 months and it was modest at best. 6 months is when I really felt a noticed improvement. 

[ch88]

You can try a elimination diet. I am not sure what else could cause the high blood test besides Celiac disease. 

A lot of people on this forum have other types of food sensitivities besides just Celaic disease. IBS can be caused by food sensitivities. I would eat a few foods that are safe (say some fruit and vegetables only for a while) and see if your symptoms improve.