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bessebc

Thoughts on symptoms and tests results for my 8 yo daughter

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Hi folks:

My 8 year old daughter was unfortunately diagnosed with Lyme Disease a few months back.  The good news is, she has made a good recovery from that nasty disease.

During her treatment, her Doctor ran a bunch of tests to check for allergies.  These initial tests showed she had allergic antibodies to Gluten.

We put her on a "mostly" gluten-free diet in Mid June as part of her Lyme treatment.  She had the full Gluten blood Panel done in late June, about 2 weeks later.

From late June until second week of August she was entirely gluten free.   She had good energy and seemed fine. 

During the second week of August, our doc recommended we try her again on Gulten to see what happens.  We were away on vacation and let her try gluten again.   She ate bread, had pizza, and had fun.  Overall, we noticed no change in her except maybe after a week she seemed a bit more run down.

OK, we though.  It seemed to us like she was sensitive to gluten, but didn't have celiac or a bad gluten allergy as there was no harsh reaction.  So she went back on a gluten free diet and was better again and we didn't worry too much if she had gluten occasionally since she could handle it.

Then, in late August she ate some gluten while out at dinner.  Big deal, we thought.  She ate gluten all week while on vacation a few weeks prior and was fine.  Except this time she wasn't.  She projective vomited and had massive cramping about 2 hours after eating it.   We thought it was a stomach bug.

8 days later she got glutened again.  She ate Pizza and again we didn't think anything of it since she had a lot of gluten in early August and was fine.   Again, she got massive cramps and vomited a bunch within 2 hours of eating the gluten.    After the vomiting subsides, she feels better and next day she is fine.

At this point my wife and I were scratching our heads trying to figure out why she was vomiting.  She's only ever done this when she has had shrimp or crab in the past as she is allergic.  But she didn't have any of these.  We didn't suspect the wheat / gluten since she ate it in early August and had no problems.  She didn't have any other type of allergic reaction / anaphylaxis.

Her Celiac Panel bloodwork from June came back late August and it was all normal, except the IgG for tTg came back significantly elevated.  IgA was normal.   (remember she had this bloodwork when she was gluten free for 1-2 weeks.)

Could this be Celiac?

No, we thought.  Can't be.  She's had tons of gluten recently and was fine. 

Well, last night we were at a barbecue and she had two small pieces of bread.   1 hour later, she said her stomach hurt.  An hour after that she was bent over in pain, unable to walk due to cramping.  Then she vomited...HARD.   Everythign came out.   Then she was better.   Today it was like it never happened.

What the hell is going on?  Obviously there is a gluten or wheat issue.   Her bloodwork has one of the markers elevated for Celiac.

But I don't understand how she could eat A LOT of gluten for an entire week in early August and handle it all and be nearly 100% fine, but then 3 weeks later she has a small amount of gluten and her body responds with massive cramping and vomiting.  

Everything I've read about Celiac says that typically the response isn't that quick.  And most of the symptoms are intestinal versus stomach.  But my daughter seems to have a near immediate response (under 1 hour) and it is all stomach.

How could her body change to how it responds to Gluten so quickly?

Thoughts on what's going on as well as her results.

I should note that the first time she vomited was about 2 hours after taking some over-the-counter Pinworm medicine (Reese's Pinworm) as her sister came down with a case of pinworm.  Yuck.    We thought it was the meds.  But now it seems it was the gluten.

 

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2 hours ago, bessebc said:

Hi folks:

My 8 year old daughter was unfortunately diagnosed with Lyme Disease a few months back.  The good news is, she has made a good recovery from that nasty disease.

During her treatment, her Doctor ran a bunch of tests to check for allergies.  These initial tests showed she had allergic antibodies to Gluten.

We put her on a "mostly" gluten-free diet in Mid June as part of her Lyme treatment.  She had the full Gluten blood Panel done in late June, about 2 weeks later.

From late June until second week of August she was entirely gluten free.   She had good energy and seemed fine. 

During the second week of August, our doc recommended we try her again on Gulten to see what happens.  We were away on vacation and let her try gluten again.   She ate bread, had pizza, and had fun.  Overall, we noticed no change in her except maybe after a week she seemed a bit more run down.

OK, we though.  It seemed to us like she was sensitive to gluten, but didn't have celiac or a bad gluten allergy as there was no harsh reaction.  So she went back on a gluten free diet and was better again and we didn't worry too much if she had gluten occasionally since she could handle it.

Then, in late August she ate some gluten while out at dinner.  Big deal, we thought.  She ate gluten all week while on vacation a few weeks prior and was fine.  Except this time she wasn't.  She projective vomited and had massive cramping about 2 hours after eating it.   We thought it was a stomach bug.

8 days later she got glutened again.  She ate Pizza and again we didn't think anything of it since she had a lot of gluten in early August and was fine.   Again, she got massive cramps and vomited a bunch within 2 hours of eating the gluten.    After the vomiting subsides, she feels better and next day she is fine.

At this point my wife and I were scratching our heads trying to figure out why she was vomiting.  She's only ever done this when she has had shrimp or crab in the past as she is allergic.  But she didn't have any of these.  We didn't suspect the wheat / gluten since she ate it in early August and had no problems.  She didn't have any other type of allergic reaction / anaphylaxis.

Her Celiac Panel bloodwork from June came back late August and it was all normal, except the IgG for tTg came back significantly elevated.  IgA was normal.   (remember she had this bloodwork when she was gluten free for 1-2 weeks.)

Could this be Celiac?

No, we thought.  Can't be.  She's had tons of gluten recently and was fine. 

Well, last night we were at a barbecue and she had two small pieces of bread.   1 hour later, she said her stomach hurt.  An hour after that she was bent over in pain, unable to walk due to cramping.  Then she vomited...HARD.   Everythign came out.   Then she was better.   Today it was like it never happened.

What the hell is going on?  Obviously there is a gluten or wheat issue.   Her bloodwork has one of the markers elevated for Celiac.

But I don't understand how she could eat A LOT of gluten for an entire week in early August and handle it all and be nearly 100% fine, but then 3 weeks later she has a small amount of gluten and her body responds with massive cramping and vomiting.  

Everything I've read about Celiac says that typically the response isn't that quick.  And most of the symptoms are intestinal versus stomach.  But my daughter seems to have a near immediate response (under 1 hour) and it is all stomach.

How could her body change to how it responds to Gluten so quickly?

Thoughts on what's going on as well as her results.

I should note that the first time she vomited was about 2 hours after taking some over-the-counter Pinworm medicine (Reese's Pinworm) as her sister came down with a case of pinworm.  Yuck.    We thought it was the meds.  But now it seems it was the gluten.

 

Welcome!

Your doctor Seems to be woefully mis-informed.    You should have been referred to a Gi for an endoscopy to confirm celiac disease.  Sorry, to be harsh...but it is true (at least based in what you have written).   

Celiac Disease is not an allergy.  Antibodies can rise fast or slow.  You can improve and even cheat and be symptom free, but the intestines are in the process of getting damaged.  Heck, I only had anemia, yet my biopsies revealed moderate to SEVERE damage.  Now, if I get glutened I have severe reactions!  Symptoms can wax and wane!  

Now, she did have Lyme Disease.    It could have raised her TTg level.    Did your doctor run a complete celiac panel?  Did you know that the Lyme disease may have triggered celiac disease?  BTW, did you know that for a celiac, mostly gluten free is not good enough?  

I would recommend another doctor (preferably one who is celiac-savvy) and researching this disease more!  I do not mean to sound harsh, but we are talking about a poor kid who needs help!  

Edited by cyclinglady
Replaced "idiot" with mis-informed and corrected the spelling for Lyme disease.

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Uh.  I think you are making a snap decision and being way to harsh.

This doctor was the one that recognized that either a gluten sensitivity, wheat allergy, or potential celiac was also in the mix with her Lyme (not "Lymes" btw).

She didn't really have any classic Celiac or even gluten symptoms.   She went gluten-free (complete gluten free at end of June...not "mostly gluten free") to help with Lyme treatment, THEN tested high for allergies to wheat and shellfish, THEN tested high on the TTg IgG on the Celiac Panel, and THEN started projective vomiting when she was exposed after being gluten free for 2 months.

My question was whether the symptoms seem fit for Celiac given she only had one of the test on the panel as positive and given she has had a bunch of gluten recently and handled it fine, but now seems to respond violently.

Obviously we are going to continue to get a proper diagnosis.  I was just looking for advice from folks who know the disease better than I do.

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9 minutes ago, bessebc said:

Uh.  I think you are making a snap decision and being way to harsh.

This doctor was the one that recognized that either a gluten sensitivity, wheat allergy, or potential celiac was also in the mix with her Lyme (not "Lymes" btw).

She didn't really have any classic Celiac or even gluten symptoms.   She went gluten-free (complete gluten free at end of June...not "mostly gluten free") to help with Lyme treatment, THEN tested high for allergies to wheat and shellfish, THEN tested high on the TTg IgG on the Celiac Panel, and THEN started projective vomiting when she was exposed after being gluten free for 2 months.

My question was whether the symptoms seem fit for Celiac given she only had one of the test on the panel as positive and given she has had a bunch of gluten recently and handled it fine, but now seems to respond violently.

Obviously we are going to continue to get a proper diagnosis.  I was just looking for advice from folks who know the disease better than I do.

Okay, I know I sounded harsh and for that I apologise.  ?.   I hate to see kids suffer and I am pretty sure you feel  the same way or you would not be here for help!  It only takes one positive on a celiac panel for a doctor to refer a patient to a GI for further evaluation.  

http://www.cureceliacdisease.org/screening/

To answer your question, yes, the symptoms you described could be related to celiac disease.  There are over 200 symptoms and those with celiac disease often have a variety of  reactions or in many cases, none.   

 

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I'm sorry but I have to agree with cyclinglady. I really don't think she's being too harsh. We see it all the time where docs say a patient should go off gluten & see how they do. The problem is the patient has to go back ON gluten for 12 weeks for the blood panel or for 2 full weeks for the endoscopy. MOST of the time the reactions after being gluten free & then going back on gluten are severe, so how is the patient supposed to do a gluten challenge? Let's take your daughter fro example. Do you think she can eat gluten every single day for a full 2 weeks much less for 12 full weeks???? With the projectile vomiting & cramps? Those were from 1 glutening. Her symptoms will likely be far, far worse & longer lasting if she's eating gluten every day.

PLEASE, I DID understand that the gluten-free diet was supposed to help the Lyme disease but you said the doc recognized that either a gluten sensitivity, wheat allergy, or potential celiac was also in the mix with her Lyme. Right then & there he should have given her the celiac serum panel rather than far after the fact. It is VERY telling that she tested positive on the TTg IgG. That is not to be confused with TTg IgA. The TTg IgG is more indicative of celiac. She had a positive blood. She should have been referred to a GI for an endoscopy right then AND told to remain on a gluten diet until ALL testing was finished. Why is cyclinglady right? Because the doc suspected possible celiac but did not test. Because the doc tested, saw the positive & still did not recognize how to correctly read the test results AND did not refer her for an endoscopy.

I see cyclinglady has posted while I've been typing.

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I did come across harsh and that was not my intent.  It sounds like your doctor may be mis-informed about celiac disease and allergies.  I am baffled as to why your daughter is consuming wheat when she was diagnosed with a wheat and shellfish allergy.  With each exposure, an allergy can become severe and even progress to death.  I would not mess around with a true IgE allergy!  

Here is some information about allergies:

https://www.aaaai.org/conditions-and-treatments/library/at-a-glance/allergy-testing

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Thanks all. Sorry if I pushed back a bit.

Just remember that what started this whole thing was my daughter's Lyme diagnosis.  We didn't even think Celiac as she didn't have any real symptoms.

Going gluten free is a very common practice while treating Lyme.   And almost no one gets a celiac panel as there is rarely a reason to consider it.

I'm glad my daughter's doc did give the panel.   Note my daughter went "mostly gluten free" in mid June and had the blood draw for the panel in late June.  (She had trouble transitioning to the new diet.)   She went fully gluten free in late June.    We didn't get her celiac panel results until August.

Until that time we never suspected Celiac.  We just thought she had a wheat sensitivity (not allergy) and were gluten free to help with the lyme treatment.

So just to be clear, I don't think this doctor was negligent.   In fact, I think we were saved months of searching for "whats wrong" by ordering the Celiac panel while she was still on gluten (a bit) after only trying to be gluten free for 2 weeks.

What I don't understand is why my daughter had a boatload of gluten in early August and was fine.  And then two weeks later had a small portion and was projectile vomiting.  The only thing that changed between those times was she did the Pin-X pinworm treatment.

Is severe stomach (not intestinal) cramps and vomiting within 2 hours of eating gluten normal for Celiac?   It seems much more like an allergic reaction than Celiac.  From what I've read about Celiac is typically the response takes longer and is more intestinal than stomach.  I know there are no hard and fast rules and symptoms vary (just like Lyme btw.)

Lastly, from what I've read, the IgG for TtG is less specific than IgA and there are a few other conditions which can cause a high IgG.  Does anyone know the other conditions?

I'm not sure we would put her back on gluten at this point. 

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Before I forget.....

The thing with her not having an official celiac dx is that she really needs that for school & later for college so she can be protected and taken seriously by law.

OK, what you wrote now & the timeline makes more sense. nO, there are no hard & fast rules for gluten reactions AND they can & have been known to change with each subsequent glutening. It's not very weird that she didn't react in early August eating a boatload of gluten but then had severe, instantaneous reactions later with so much less gluten. You're exactly right - symptoms do vary & change over time. BTW, just because she didn't react in August doesn't mean she wasn't getting damaged. Did you know there's such a thing as silent celiac? That's where there are ZERO outward symptoms yet there is/can be unbelievable damage to the small intestine. The body has amazing ways to cope with stuff at times. Boggles the mind! Also, over 50% of diagnosed celiacs did NOT present with GI symptoms.

An allergic reaction, from what I understand, involves rash, breathing difficulties, swelling. 

OH, do you have copies of her celiac panel? What tests was she given?

This is the full, current panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

It's okay about the pushing back. You're a very concerned mom who is understandably stressed at this point. We don't mean to be pushy or harsh either. For our part, we so often see where docs tell the patient to go gluten-free before they get tested "to see of it helps". Well, that then blows it for so many b/c they then get so sick on a gluten challenge that they are unable to complete it. OR the test results are a false negative because the patient had been gluten-free upon doctors orders. This results in them never being able to get a dx and it's all because the doc didn't know the testing protocols. We've heard it thousands of times. I know my hackles raise up big time when I see that happening with yet another patient. It's so frustrating!

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I appreciate the help.   I love you guys are passionate about helping.  I'm trying to get answers.  Here are more details:

-Daughter wasn't feeling well in early 2016.   Symptoms seemed to be lyme related (she has had it before) but also seemed to be allergy related as she had itchy scalp, and some skin dryness.

-Initial visit with Lyme doc.  Did blood draw for Lyme as well as a food allergy panel (IgG Elisa)

-In May...got results of Lyme panel.  Positive.  Got results of food allergy panel.   Was high in Gluten allergy (0.467) and even higher with wheat allergy (0.505)     These were the highest allergy responses she had.  Doctor said to cut wheat / gluten due to potential allergy.

She had her Celiac Disease Comprehensive panel done by Labcorp at the end of June.  Results are:

  • Deamidated Gliadin Abs IgA:     3 (Negative)   Range 0-19
  • Deamidated Gliadin Abs, IgG:    11 (Negative)   Range 0-19
  • t-Transglutaminase (tTG) IgA:      3 (Negative)  Range: Negative 0-3, weak positive 4-10, positive >10
  • t-Transglutaminase (tTG) IgG:      27 (HIGH / POSITIVE).     Range:  Negative 0-5, weak positive 6-9, positive >9
  • Endomysial Antibiody IgA:   Negative
  • Immuniglobulin A, Qn, serum:     125       (Normal)    Range 51-220
  • Immuno fixation, Serum:    An apparent polyclonal gammopathy:  IgA.  Kappa and lambda typing appear increased
  • Immunoglobulin G, Qn, Serum:    882 (Normal)   Range 572 - 1474
  • Immunoglubulin M, QN, Serum:    48 (Low)   range 51-187

The only ones that were "flagged" were the very high tTG IgG, the Serum Immunofixation, and the low IgM.

She had been on a "mostly gluten free" diet for about 2-4 weeks before this test was done.  Still had gluten occasionally, but not regularly.

Since then has been gluten free except for the 3-4 episodes described above.

Edited by bessebc

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It looks like she did have all the celiac tests and some more tests besides. I am not familiar with those other tests, what they mean or what they would be looking for.

I'm sorry, I don't know what the Immunofixation is - have never heard of it before. I wish I had an answer for you. Maybe someone will come along who knows something about that. I will say, for now, don't freak out thinking she has cancer. Wait. Hold on to your hat. Sometimes we read about these things & they are very scary & then we find out it means something else. Besides, the doc looked at those right? How about emailing the doc & asking what that result means.

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1 hour ago, bessebc said:

Sorry, one more thing.

Should I be concerned with the Immunofixation result?  It showed "An apparent polyclonal gammopathy:  IgA.  Kappa and lambda typing appear increased"

I've read where this could be CANCER???

Ug.

I think with cancer, the thing to be worried about is "monoclonal". With polyclonal gammopathy, that is more of an indication of infection or inflammation.  I know this because I had elevated protein levels in my blood at Celiac diagnosis, which really makes sense because with Celiac, you are reacting to proteins, which in turn cause all sorts of inflammation.  Everything resolved after I was gluten-free for about 3 years. Celiac can cause all sorts of weird blood results until you go strictly gluten-free and let your body heal.  Lyme may do the same but I agree with the others that the doctor should never have said go gluten-free without investigating further.  The only way the gluten-free diet could help with Lyme is if the patient already has Celiac.

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Hi Besse,

I don't think you posted any IgE test results, right?  IgE is the immune reaction for allergies.  If she does have an IgE reaction, that is very different from celiac disease which is IgA and IgG related.  IgE reactions (allergies) are also more dangerous in the short term.  If she is having an IgE reaction to wheat she should definitely not be eating any of it at all.  Allergy reactions can become more severe suddenly and cause death.  Consider the peanut kid stories, those are IgE allergic reactions.

I am not sure what your doctor means by a gluten allergy.  Gluten is (around here) considered the protein in wheat, rye and barley that causes a celiac reaction.  The celiac reaction is not an allergy because it does not involve the IgE antibody.  A gluten allergy in theory would mean an IgE reaction to wheat, rye and barley protein.  This may seem like quibbling over details abut it is important to understand the IgE reactions are different.

Everybody is right about he doctor screwing up.  They should not have changed her diet before testing for celiac disease was completed.  Including the endoscopy which most doctors require for a full diagnosis of celiac disease.

I agree, there is no reason to take someone off gluten to treat lyme disease.  That makes no sense.  But a people do try alternative treatments for lyme disease because it is hard to cure.  So I am not surprised if people are promoting gluten-free as a lyme disease treatment.  The gluten-free diet has become popular treating all kinds of conditions in the alternative medicine field.

Your daughters' symptoms may vary like the wind.  That doesn't change the need for a gluten-free diet if she really is celiac.  The human body is a complex thing and has many compensation systems to deal with problems.  One of those systems is the immune system.  It produces antibodies to fight infections and it;s really good at that job.  And once it learns an enemies (germ) identity it never forgets it.  Even a tiny amount of gluten can kick of an immune response.  When was the last time you saw a measles germ?  But your immune system detects them and kills them if you have the immunity.

In celiac disease the immune system learns to react to gluten and attack it when it gets in the intestinal lining.  The intestinal lining (villi) are in the way to they get destroyed along with the nasty gluten.  An immune reaction continues until all the offending invaders are dead and gone.  Then it may start tapering off very quickly ( a couple weeks ) or over months.  Maybe longer.

The villi damage impairs the ability of the small intestine to absorb nutrients.  So a child with celiac disease sometimes has short stature because they are basically starving even while eating plenty of food.  Vitamin levels may be low and minerals.  Fatigue may occur also.  Pale or mottled facial complexion and many other symptoms.  Celiac disease can affect the entire body.

You are correct about symptoms varying.  Before I went gluten-free I had days that I was just fine.  I also had not so fun days.  It was quite variable.  I did have problems with projectile vomiting at times.  My symptoms often started about 30 minutes after eating gluten.  Dairy also caused me plenty of GI symptoms.  The intestinal villi also produce enzymes and one of them is lactaze, the enzyme that digests milk sugar.  After being on the gluten-free diet a while, some people regain the ability to digest dairy, but not all do.  It should affect her test results to stop dairy for a while though.  Lactose intolerance can cause plenty of gas and discomfort.

Anyhow, welcome to the forum! I am not always so long winded. :)  I hope something in there helps a little.

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Thanks All.

I appreciate the input.   We will agree to disagree on whether or not the doctor made a mistake by suggesting a gluten free diet.

Contrary to what is said in this thread, many complex lyme patients also are on a gluten free diet, with some others doing dairy and/or sugar free.  it is pretty standard practice.   If there is a hint of an allergy, you remove the allergen so the body's immune system isn't distracted so you can fight the Lyme.

I know Lyme very well and all of the best ILADS-trained doctors promote this.

Again, she was positive for Lyme.  So she went gluten free because she showed high titers for wheat and gluten allergies.

Then got Celiac Panel.   One of the tests was positive, all else negative.

Now has a sudden (within 1-2 hours) violent stomach reaction to Gluten when eaten.  It never gets to her intestines as it isn't in her stomach long enough.

Strangely enough, she used to have this same exact reaction to shellfish.  If she ate Shrimp or Crab...she would puke everywhere within 2 hours.

I appreciate all of your insights.    We are assuming it is likely Celiac, and will be following up with the Dr. 

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13 minutes ago, bessebc said:

 

Now has a sudden (within 1-2 hours) violent stomach reaction to Gluten when eaten.  It never gets to her intestines as it isn't in her stomach long enough.

 

The gluten reaction begins in the mouth. Gluten begins to be absorbed the minute it comes into contact with the lining of your mouth. This starts the antibody reaction.  Even if a celiac were to spit out a piece of gluteny food and rinse their mouth right away chances are they would still react.  (Been there done that very early on)

I hope your little one is feeling better soon.

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