New Here And Really Hoping Someone Can Help Me

[wytchywoman]

Hi everyone,

I have a fifteen year old son who is having a lot of medical issues that I think are possibly linked to celiac. Namely he is 5' 3 1/2" and weighs 86 pounds. He is not what I consider to be healthy. His immune system does not function well. He is often sick and has a very hard time getting rid of colds once he has them. He also gets weird complications when he is sick. He has been diagnosed with fibromyalgia and the muscles in his back are constantly hot, swollen and inflamed. He suers from a lot of body aches and frequently has nose bleeds. he rarely has diarrhea but has awul gas all the time and sometimes complains of stomach aches and relux.

We did a breath hydrogen test yesterday with the gastro and he tested positive for bacterial overgrowth in the gut and was given an antibiotic. The dr said that he did not think he has celiac or wheat/gluten intolerance based on blood work results. The results are as follows:

Sed rate: 3

Gliadin Antibody Panel IgA : <3

Gliadin Ab IgG: 46H

Tissue Transglut Antibody (tTG) Ab, IgA: <3

Apparently the IgG test is the only one outside of the normal reference range. The gastro said bacterial overgrowth could cause that test result to come back like that.

I am still concerned though because of all the symptoms Ben has. I have done hours and hours of research and the one thing that keeps coming up is celiac disease. I have not encountered any info that says bacterial overgrowth could cause FTT in an adolescent ( or any other person for that matter). Ben saw his ped or the first time in a few months last week and the nurse actually pulled me aside and asked if he was eating and did I think maybe he might have anorexia, he is that thin and drawn looking.

I guess an endoscopy is our next option but Ben is really freaked out about that and I am beginning to wonder if i should just put him on a gluten free diet without any medical tests to back me up and just see what happens. I hate to start him on such a restrictive diet without knowing for certain that it is needed( I did gluten-free/CF with my younger son and quite frankly I would rather gouge my own eyeball out with a fork than implement a gluten free household again) but i am really at a loss right now as to what else I can do. All I know is that I have an extremely skinny, unhealthy teenager and not too many answers at this point.

Anyone have any experience with this? Thanks in advance for any help you can offer.

Michelle

PS... he has been tested for JRA and some other autoimmune stuff and so ar nothing has been discovered, the tests have always been negative.

[Rachel--24]

His symptoms could be caused by Lyme infection. Fibro is very often caused by Lyme.....and correct diagnosis with proper treatment resolves those symptoms. Dysbiosis (overgrowth of bad bacteria and/or yeast) can be a consequence of a suppressed immune system....also very common for people with Lyme or other chronic hidden infections.

Yes, its true that the gut infections can cause the elevated antigliadin IgG. This is the least specific for Celiac Disease.

However, I'm not seeing results for Total Serum IgA??

If that test was not ordered....it should be in order to avoid any possibility of false negativity due to IgA deficiency. I would not rule out Celiac without having the total IgA checked.

Even if he does not have Celiac....he does have a gluten intolerance and the diet will be very helpful for him right now.

Dont start a gluten-free diet until after the endoscopy though.

All Celiac tests need to be performed while gluten is still in the diet.....except the total serum IgA...which can be done at any time.

[wytchywoman]

His symptoms could be caused by Lyme infection. Fibro is very often caused by Lyme.....and correct diagnosis with proper treatment resolves those symptoms. Dysbiosis (overgrowth of bad bacteria and/or yeast) can be a consequence of a suppressed immune system....also very common for people with Lyme or other chronic hidden infections.

Yes, its true that the gut infections can cause the elevated antigliadin IgG. This is the least specific for Celiac Disease.

However, I'm not seeing results for Total Serum IgA??

If that test was not ordered....it should be in order to avoid any possibility of false negativity due to IgA deficiency. I would not rule out Celiac without having the total IgA checked.

Even if he does not have Celiac....he does have a gluten intolerance and the diet will be very helpful for him right now.

Dont start a gluten-free diet until after the endoscopy though.

All Celiac tests need to be performed while gluten is still in the diet.....except the total serum IgA...which can be done at any time.

Thanks Rachel. I appreciate your response. I do have some questions for you. Is it possible to have Lyme disease without having the hallmark symptoms? I have fibromyalgia as well and as far as I know neither myself or my son have ever been bitten by a tick or had a bullseye rash anywhere on our bodies.

As far as I know a total serum IgA was not ordered. the test results I posted are the ones I have so I can only assume that test wasn't done.

You did mention gluten intolerance, do you think this is the case because of the bloodwork or symptoms or is it a speculation at this point? I am trying really hard to convince him to do the endoscopy, but he has a hard time dealing with any medical procedures at all, even blood work cause major drama with him. I know that gluten free prior to endoscopy will throw off all the results. I just read ( on here) about enterolabs and may use that in lieu of an endoscopy if I can't get Ben to cooperate with the endoscopy.

[Rachel--24]

Thanks Rachel. I appreciate your response. I do have some questions for you. Is it possible to have Lyme disease without having the hallmark symptoms? I have fibromyalgia as well and as far as I know neither myself or my son have ever been bitten by a tick or had a bullseye rash anywhere on our bodies.

Yes, its possible (and very common) to have Lyme with no knowledge of previous exposure....and no tell tale sign (such as bulls-eye rash). The majority of people I know who have chronic Lyme were not aware that they had been exposed....and were not considering Lyme as a possibility for symptoms....but were later diagnosed with positive bloodtests.

Also, Lyme can be passed from mother to child...so it is possible for kids to be born with Lyme (and never exposed to ticks).

Lots of people have Lyme without any health problems....it only becomes an issue when the immune system is no longer strong enough to keep it at bay.

Its definately something to consider if these symptoms persist. Keep in mind that Lyme testing is not all that reliable...and most people get false negatives with labs that do not have a high sensitivity (which is most labs). If you ever do decide to get tested make sure you get the best tests available (otherwise its kind of a waste). One of the best labs is IgeneX.....which specializes in tick-borne diseases, has the most reliable tests (highest sensitivity) and is most often used by Dr.'s who are knowledgeable about diagnosing and treating Lyme Disease.

As far as I know a total serum IgA was not ordered. the test results I posted are the ones I have so I can only assume that test wasn't done.

Without knowing whether or not he has normal levels of IgA....all of his bloodwork (except IgG) is questionable. If he is IgA deficient he would not produce enough IgA to have positive test reults.....even if he has full blown Celiac Disease.

You did mention gluten intolerance, do you think this is the case because of the bloodwork or symptoms or is it a speculation at this point?

The positive IgG indicates that he is reacting to gluten....however, it doesnt mean he has Celiac Disease.

People can be having problems with gluten for reasons other than Celiac (non-Celiac gluten intolerance). Bacteria overgrowth and unhealthy gut conditions can lead to poor digestion and leaky gut....which can result in food intolerance. Most common are gluten, dairy and soy.

In order to be more sure about whether or not Celiac is a possibility he should have his total IgA tested and the endoscopy (if possible). Gene testing can also be helpful (but not diagnostic by itself).

[Rachel--24]

Enterolab cannot diagnose Celiac Disease.

Its basically a food intolerance test (Celiac is an autoimmune disease)....so it can tell you whether or not there is a sensitivity to gluten....but it cannot give you a diagnosis. It wont tell you whether or not the sensitivity is because he has Celiac Disease, or bacteria overgrowth....or something else.

Enterolab isnt going to tell you anything more than you already know.....and you already have elevated IgG indicating a sensitivity to gluten.

[mftnchn]

I disagree a little bit with this. Enterolab does do a fecal ttg--which is more specific, but still they don't claim to be diagnostic. They also do a malabsorption test, again not specific, but only suggestive for celiac. They also do the genes, which would give you more information.

I agree with Rachel, get the total IgA! If that is low, then you really need to do further testing to rule out celiac because low IgA is also suggestive of celiac. If total IgA is low, I'd press for the endoscopy asap. Your son's condition is very concerning, and I'd say his overall health would overrule his personal objections at this point.

In addition, I'd get a good stool test to look at malabsorption. If he is absorbing poorly, the doctors might take you more seriously and stop pointing a finger of anorexia (i.e. mental problems). Also he may need some interventions with heavy supplementation, or injections of nutrients. Again this may freak him out but his fears/panic may also be a part of his symptoms.

I also agree with the lyme disease concern. Your son could even have both of these conditions--I do.

Glad you are posting here, and hope we can support and help you with this difficult situation.

[feedmykids]

Time to see a GI Doctor, and even though he is 15, I would still see a pediatric GI. My DD results were TTG IgA= 0, Antigliadin IGA =6, Antigliadin IgG = 74. Our doc. was very concerned about this because those results can also be Cystic Fibrosis. I have a niece with CF and have had two cousins with CF. The CF specialist is convinced that Celiac and CF are related somehow because the two are so similar in symptons and test results. My DD showed negative to CF, so we took her off of gluten anyway and her weight dramatically improved. IMO I would have him do a sweat test just to rule out CF. then I would try the diet, just for him, not for the whole family.

[wytchywoman]

We have seen a ped GI. Apparently he is the best in town. He is hell bent on solving this with antibiotics.

I just can't help but think that all of these symptoms have a bigger picture involved and no one is spotting it. You are the second person to mention CF, and given that all that's involved is a sweat test I will definitely request this. I am going to ask for all the blood work to be redone with the TS IgA included this time. I will look into the lyme disease testing as well, but I am not sure how that specific lab gets involved. Do I ask that a seperate tube be drawn and then sent to that specific lab?

Anything else I should ask them to draw for?

Also, I get that a lot of people think I should make him do the endo. But the fact is that he is 15 years old and taller than I am. How do you "make" someone bigger than you do anything? I can try to illicit cooperation but in the end if he refuses, at this stage there is little i can do. I also forgot to mention that has also has aspergers and does not handle stress and fear like an average teenager, we do have behavioral issues on top of all the medical stuff which makes all of this very hard to deal with for both him and myself.

Thanks again for all your input.