Dramatic Reactions with Rash, tested negative

[justthemom]

About 3 months ago, my college age daughter suddenly developed a host of symptoms that were quickly narrowed down to whenever she would eat anything containing gluten. 
- immediate dramatic bloating 

-soft stools

-headache

-joint pain and muscle aches in limbs

-numbness/pins and needles in arms or legs that would last for hours

-large patches of a fine itchy rash with that would develop within 30 minutes to 2 hours after eating

A friend with celiac led her to suspect it and internet search let her know to continue eating gluten until testing was complete. She was able to get into a GI who ordered the bloodwork panel, which was all negative. She was then scheduled for a biopsy two weeks later which was “normal” and the biopsies did not show any damage. 

At this point she was just content to go on a fully gluten free diet and stop experiencing the symptoms, and she has been doing great and feeling well. All symptoms stopped immediately, except for two times she was cross contaminated. Once was at a Chipotle (she assumes the same gloves touching tortillas then the cheese all day), and the other was a gluten “sensitive” Mac and cheese from a restaurant. But both times, with the tiny amount that could be in cross contamination, the reaction was just as dramatic if not more so, especially the rash. 
 

Is it typical for a non-celiac gluten sensitivity to be so dramatic? 
Is it possible that she has Celiac and the testing was done too soon after onset to detect antibodies or damage? (all completed within a month of her first symptom). 
Anything else we should consider? 

 

[trents]

31 minutes ago, justthemom said:

Is it typical for a non-celiac gluten sensitivity to be so dramatic? 
Is it possible that she has Celiac and the testing was done too soon after onset to detect antibodies or damage? (all completed within a month of her first symptom). 
Anything else we should consider? 

 

It is not atypical for non celiac gluten sensitivity to manifest itself so dramatically. The symptoms are essentially the same as with celiac disease and so are many of the long term health risks.

Yes, it is possible for the testing to have been done too soon after the onset of celiac disease in order to give valid results. The guidelines are being on gluten daily in the amount of or the equivalent amount of found in 2 slices of wheat bread for at least 6-8 weeks before antibody testing and at least 2 weeks before endoscopy/biopsy. But such an experience as this would be atypical I think. Anyway, if the symptoms disappear when she goes gluten-free then you have all the proof you need that she either has celiac disease or NCGS (non celiac gluten sensitivity). It is a blessing that this seems to have been caught so early, before much damage has likely been done to body systems.

[Scott Adams]

Feel free to share her blood test results here with the cut off levels for positive. I've found that sometimes "negative" isn't so negative. My daughter, for example, had TTG levels that were 1-2 points below the positive marker, and her doctor told her "good news, you don't have to stop eating gluten," which she did, but kept having various symptoms. She inherited one of my two genetic markers for it (DQ2), and eventually had to go gluten-free for her symptoms to stop. Perhaps your daughter's blood tests results might be similar to my daughter's?

[justthemom]

32 minutes ago, Scott Adams said:

Feel free to share her blood test results here with the cut off levels for positive. I've found that sometimes "negative" isn't so negative. My daughter, for example, had TTG levels that were 1-2 points below the positive marker, and her doctor told her "good news, you don't have to stop eating gluten," which she did, but kept having various symptoms. She inherited one of my two genetic markers for it (DQ2), and eventually had to go gluten-free for her symptoms to stop. Perhaps your daughter's blood tests results might be similar to my daughter's?

Here is the bloodwork I have:

Antigliadin Abs, IgA   4  

Antigliadin Abs, IgG   2

tTG IgA  <2

Endomysial Antibody IgA  Negative

Immunoglobulin A Qn, Serum 142

On her CBC and metabolic panel, everything was normal except her Alkaline Phosphatase was low, which google says can be a sign of Celiac or malnutrition 

 

[Scott Adams]

Is there a scale associated with any of these? What level is positive for each of them?

[justthemom]

53 minutes ago, Scott Adams said:

Is there a scale associated with any of these? What level is positive for each of them?

Yes, here you go…

Antigliadin Abs, IgA   4  (weak positive is 20-30, positive is >30)

Antigliadin Abs, IgG   2 (weak positive is 20-30, positive is >30)

tTG IgA  <2 (weak positive is 4-10, positive is >10)

Endomysial Antibody IgA  Negative

Immunoglobulin A Qn, Serum 142 (normal is 87-352)

The results look very normal to me, not even borderline. At this point she was eating gluten once a day, for the sake of testing, but having a horrible reaction each time, so I would think it would be enough to show antibodies if it was going to) 

[Jackie Garrett]

18 hours ago, justthemom said:

About 3 months ago, my college age daughter suddenly developed a host of symptoms that were quickly narrowed down to whenever she would eat anything containing gluten. 
- immediate dramatic bloating 

-soft stools

-headache

-joint pain and muscle aches in limbs

-numbness/pins and needles in arms or legs that would last for hours

-large patches of a fine itchy rash with that would develop within 30 minutes to 2 hours after eating

A friend with celiac led her to suspect it and internet search let her know to continue eating gluten until testing was complete. She was able to get into a GI who ordered the bloodwork panel, which was all negative. She was then scheduled for a biopsy two weeks later which was “normal” and the biopsies did not show any damage. 

At this point she was just content to go on a fully gluten free diet and stop experiencing the symptoms, and she has been doing great and feeling well. All symptoms stopped immediately, except for two times she was cross contaminated. Once was at a Chipotle (she assumes the same gloves touching tortillas then the cheese all day), and the other was a gluten “sensitive” Mac and cheese from a restaurant. But both times, with the tiny amount that could be in cross contamination, the reaction was just as dramatic if not more so, especially the rash. 
 

Is it typical for a non-celiac gluten sensitivity to be so dramatic? 
Is it possible that she has Celiac and the testing was done too soon after onset to detect antibodies or damage? (all completed within a month of her first symptom). 
Anything else we should consider? 

 

You could try avoiding Lactose,   I have a number of symptoms if I   Consume it from hives to a number of symptoms. They all go if I keep away from it.

[cristiana]

Hi justthemum

Was there an IgE test as well? My levels have recently trebled, and this coincides with the fairly recent appearance of a nasty rash in my scalp, across my shoulders, back and stomach.   It calms down if I use regular moisturisers and when it is bad a topical steroid helps.   My doctor now says he thinks I have a type of eczema. 

I don't eat gluten as a coeliac, but one of the things that aggravates this eczema, if indeed that is what it is, is eating certain nuts.   I gave up chocolate for a few weeks in the spring and instead took up eating products with nuts in them and the rash got really bad.  Hot and cold weather, and hormone fluctuations also seem to be relevant, but I am quite sure that nuts are a big factor for me, so I can see that in the same way gluten might be a factor for others.   

Cristiana

 

[trents]

5 hours ago, Jackie Garrett said:

You could try avoiding Lactose,   I have a number of symptoms if I   Consume it from hives to a number of symptoms. They all go if I keep away from it.

I would suspect the culprit is not lactose but the protein "casein" in dairy.

[GFinDC]

On 6/18/2021 at 8:51 AM, justthemom said:

About 3 months ago, my college age daughter suddenly developed a host of symptoms that were quickly narrowed down to whenever she would eat anything containing gluten. 
- immediate dramatic bloating 

-soft stools

-headache

-joint pain and muscle aches in limbs

-numbness/pins and needles in arms or legs that would last for hours

-large patches of a fine itchy rash with that would develop within 30 minutes to 2 hours after eating

A friend with celiac led her to suspect it and internet search let her know to continue eating gluten until testing was complete. She was able to get into a GI who ordered the bloodwork panel, which was all negative. She was then scheduled for a biopsy two weeks later which was “normal” and the biopsies did not show any damage. 

At this point she was just content to go on a fully gluten free diet and stop experiencing the symptoms, and she has been doing great and feeling well. All symptoms stopped immediately, except for two times she was cross contaminated. Once was at a Chipotle (she assumes the same gloves touching tortillas then the cheese all day), and the other was a gluten “sensitive” Mac and cheese from a restaurant. But both times, with the tiny amount that could be in cross contamination, the reaction was just as dramatic if not more so, especially the rash. 
 

Is it typical for a non-celiac gluten sensitivity to be so dramatic? 
Is it possible that she has Celiac and the testing was done too soon after onset to detect antibodies or damage? (all completed within a month of her first symptom). 
Anything else we should consider? 

 

There is a condition some celiacs get called DH (dermatitis herpetiformis).  It causes itchy blisters on the skin, usually in a symmetrical pattern on the body.  So both elbows or both knees etc.  People with DH can have negative serology (blood test results) for celiac antibodies.  They also may not show up on endoscopy.  DH tends to get worse if not treated with the gluten-free diet.  The issue is the antibodies deposit in the skin and cause the blister/lesion reaction.  That may be why the blood and endoscopy tests don't show DH well.  The antibodies are going somewhere else i.e. the skin.

[Scott Adams]

The blood tests do look negative, but that would not necessarily rule out non-Celiac gluten sensitivity, and since you have said that she has a horrible reaction each time she eats gluten, that would be my suspicion. I would try a gluten-free diet for a few months to see if those symptoms go away, and if so it’s likely that she has non-celiac gluten sensitivity.

[Jackie Garrett]

9 hours ago, trents said:

I would suspect the culprit is not lactose but the protein "casein" in dairy.

I’m pretty sure it’s Lactose, how could I find out for sure, is there a test for Casein intolerance ?

[trents]

Jackie Garrett,

Exactly what symptoms does your daughter get when she consumes dairy? Your only post in this thread seems to be in reply to someone else's post who is describing her daughter's symptoms, not your daughter's. So I'm confused.

Edited June 20, 2021 by trents

[Jackie Garrett]

2 hours ago, trents said:

Jackie Garrett,

Exactly what symptoms does your daughter get when she consumes dairy? Your only post in this thread seems to be in reply to someone else's post who is describing her daughter's symptoms, not your daughter's. So I'm confused.

I’m not sure what happened there, I haven’t mentioned my daughter ? 

[trents]

6 hours ago, Jackie Garrett said:

I’m not sure what happened there, I haven’t mentioned my daughter ? 

My bad. I see what confused me.  You quoted the OP who was describing their daughter's symptoms.

Anyway, did you notice the poster you quoted said her daughter's symptoms happened whenever she ate something containing gluten, not dairy? Gluten is a protein found in what, barley and rye. Lactose is the sugar in milk. Lactose intolerance has to do with lacking or lacking enough of the proper microbes in the gut needed to break down the sugar which results in digestive destress. But lactose intolerance would not cause the neurological symptoms, headache and rash the OP described as her daughter's experience. 

[Jackie Garrett]

3 hours ago, trents said:

My bad. I see what confused me.  You quoted the OP who was describing their daughter's symptoms.

Anyway, did you notice the poster you quoted said her daughter's symptoms happened whenever she ate something containing gluten, not dairy? Gluten is a protein found in what, barley and rye. Lactose is the sugar in milk. Lactose intolerance has to do with lacking or lacking enough of the proper microbes in the gut needed to break down the sugar which results in digestive destress. But lactose intolerance would not cause the neurological symptoms, headache and rash the OP described as her daughter's experience. 

So do you think if I try a gluten free diet I will be able to tolerate dairy again ? I have never tried a gluten free diet ?

[justthemom]

Jackie, it might be helpful if you start a new topic to discuss your own issues with dairy. You might be able to get more specific help that way. My daughter does not have any issues with dairy, and my hope for discussion and help about her situation has become completely derailed by this discussion about your dairy issues. 

[Jackie Garrett]

58 minutes ago, justthemom said:

Jackie, it might be helpful if you start a new topic to discuss your own issues with dairy. You might be able to get more specific help that way. My daughter does not have any issues with dairy, and my hope for discussion and help about her situation has become completely derailed by this discussion about your dairy issues. 

Sorry 

[trents]

No problem, Jackie. It's just that starting your own thread would avoid the appearance of having hijacked the thread started by the original poster. I hope you will start your own thread. Dairy intolerance is very common among celiacs because of the damage to the small bowel lining.

[Jackie Garrett]

9 hours ago, trents said:

No problem, Jackie. It's just that starting your own thread would avoid the appearance of having hijacked the thread started by the original poster. I hope you will start your own thread. Dairy intolerance is very common among celiacs because of the damage to the small bowel lining.

I didn’t mean to, I don’t know how that happened. I will try and avoid Gluten and see what happens. Thank you

[ravenwoodglass]

On 6/19/2021 at 10:32 AM, GFinDC said:

There is a condition some celiacs get called DH (dermatitis herpetiformis).  It causes itchy blisters on the skin, usually in a symmetrical pattern on the body.  So both elbows or both knees etc.  People with DH can have negative serology (blood test results) for celiac antibodies.  They also may not show up on endoscopy.  DH tends to get worse if not treated with the gluten-free diet.  The issue is the antibodies deposit in the skin and cause the blister/lesion reaction.  That may be why the blood and endoscopy tests don't show DH well.  The antibodies are going somewhere else i.e. the skin.

I had svere DH and that was the case for me.  She may want to restrict iodine in her diet also until her skin is well healed. She should also avoid gluten in her topical products like shampoos and lotion etc.

[justthemom]

32 minutes ago, ravenwoodglass said:

I had svere DH and that was the case for me.  She may want to restrict iodine in her diet also until her skin is well healed. She should also avoid gluten in her topical products like shampoos and lotion etc.

I am curious about DH. Her rash is bumpy, but doesn’t seem to be blisters…but since her issues with gluten were so new and so obvious, she quickly reduced her diet to eating gluten once a day before bedtime to try and sleep through the worst of it (until testing was done) and now is off gluten completely. She takes benedryl and uses hydrocortisone cream at the first sign of rash when cross contaminated and that seems to keep it from developing further, and it fades within a day or two. I have no idea what would happen with the rash if she were to continue eating gluten.  
She is scheduled for allergy testing, just to check that box and make sure we aren’t missing anything. She can mention it to the dermatologist at her next annual visit, but it would be unlikely for there to be anything to show at the time.

Thanks for the heads up about iodine and gluten in other products. I’ll have her double check. 

[ravenwoodglass]

10 hours ago, justthemom said:

 
She is scheduled for allergy testing, just to check that box and make sure we aren’t missing anything. She can mention it to the dermatologist at her next annual visit, but it would be unlikely for there to be anything to show at the time.

Thanks for the heads up about iodine and gluten in other products. I’ll have her double check. 

It was an allergist who was responsible for me finally being diagnosed. I had skin prick testing for 99 items and the only thing I didn't react to was beech trees. This prompted him to have me do a doctor guided elimination diet and that lead him to then refer me to a GI who confirmed celiac. After a few months on the diet my only true allergies turned out to be mild allergies to cats, dogs and some pollen. I mention this because the first allergy testing really freaked myself and my family and was costly in the amount of changes the household had to make. The allergist said my immune system was, as he put it, in hyperdrive from the celiac. If she should have the same reaction don't be in too much of a rush to do stuff like rehome any pets or rip out carpets etc. since the reactions may resolve after she has time to heal. I hope she is feeling better soon.

[justthemom]

On 6/23/2021 at 4:45 AM, ravenwoodglass said:

It was an allergist who was responsible for me finally being diagnosed. I had skin prick testing for 99 items and the only thing I didn't react to was beech trees. This prompted him to have me do a doctor guided elimination diet and that lead him to then refer me to a GI who confirmed celiac. After a few months on the diet my only true allergies turned out to be mild allergies to cats, dogs and some pollen. I mention this because the first allergy testing really freaked myself and my family and was costly in the amount of changes the household had to make. The allergist said my immune system was, as he put it, in hyperdrive from the celiac. If she should have the same reaction don't be in too much of a rush to do stuff like rehome any pets or rip out carpets etc. since the reactions may resolve after she has time to heal. I hope she is feeling better soon.

She had her allergy testing today. They tested 60 foods and she reacted to everything, including the negative control (distilled water, I think) with about 5-8mm hives, just as you mentioned she might. Obviously, she is not allergic to everything, and they considered her negative to everything and want to do bloodwork to check for inflammation.