Allergist Vs. Biopsy

[averyevansmom]

I was wondering if I should take the less invasive route and see an allergist for my son first before we go ahead with the upper and lower endoscopy. I really don't want to put him through something like this unless I absolutely have to. Anyone else take this route first or have any other opinions or options to suggest? Thanks.

Becky

[dlp252]

Well, I can offer an opinion on the allergist. Almost 4 years ago I went to an allergist/ENT to see if HE could figure out why I was sick all the time. He tested me for 30 some allergens and turns out I was allergic to almost all of them. He put me on allergy shots twice a week, which I ended up staying on until just a couple of months ago. Sometime during that first year I also went to be tested for food allergens...turns out I was only mildly reactive to 4 foods (oddly, I rarely eat any of them except barley which as we now know is in almost everything). During this 4 years my symptoms have not eased up at all (except for the two short periods where I was eating mostly meat, vegetables and a little fruit). I retested a couple of months ago and am now only allergic to 5 things, so theorectically I should show improvement in my symptoms. I have not been retested for food allergens though.

My doctor was wonderful and was willing to explore different theories such as Candida Albicans, low thyroid, etc. to explain some of my symptoms, but none of which helped--he retired in June, or I bet I could have talked him into doing the bloodwork for Celiac...although not sure it would have showed much in the traditional tests because I had been low carb for so long.

So, I don't think I have a point to all that except that in the end, the allergies weren't the cause of my sickness...

Sorry that was so long...and, probably not much help, lol.

[Guest nini]

you could avoid the Dr. route all together and do an allergy elimination diet... there are web sites and books that explain how to do an allergy elimination diet and then how to reintroduce foods into your diet and track it.

Celiac IS NOT an allergy so an allergist would not be able to diagnose Celiac. An allergist could determine if there is a wheat allergy.

Personally, I feel the biopsy is invasive and costly and can still miss damage if not enough samples are taken, there isn't any damage YET, or the patient is already on a gluten-free diet and healing... The specific blood test panel for Celiac (which you can find on this board) is the most medically accurate way of screening to see if you or your child has markers for Celiac, And if you try a strict 100% Gluten Free diet and IT WORKS, then a positive dietary response is a very valid diagnostic tool.

[ravenwoodglass]

I was wondering if I should take the less invasive route and see an allergist for my son first before we go ahead with the upper and lower endoscopy. I really don't want to put him through something like this unless I absolutely have to. Anyone else take this route first or have any other opinions or options to suggest? Thanks.

Becky

After years of misdiagnosis by many doctors and many, many false negative celiac panels I was finally diagnosed through an elimination diet by an allergist. He also skin tested and I too showed up allergic to everything but beech trees. It was not easy to find an allergist who would do an elimination diet but they are out there. Most will just give shots, mine chose to wait till the elimination was done before doing any shots. Many of my allergies have been relieved after being gluten-free. If you do go the endo route though please be assured that it is not a horrible experience. My daughter was diagnosed after me but by blood and endoscopy. It was not as bad as she had feared. Personally I would go with the elimination diet if your doctor agrees unless your son is having symptoms that make them want to rule out other serious problems.

[averyevansmom]

Thank you all for your quick replies. There are a couple of things making me think of food allergies with his gi and skin issues. Since October he has has 2 yeast infections on his penis, his ESR (sed) rate is 3-4 times higher than it should be in a normal child, (usually found in autoimmune diseases), he is very anemic, he is either constipated or has diarrhea (has been this way since birth). He now has a backup of hard stool in his lower bowel (I guess that's where it is). No obstruction. As an infant he suffered from horrible excema that got infected within a day. I nursed and could not have dairy, corn, tomatoes, citrus an some others I can't remember. He was always constipated as an infant and had reflux. Has grainy stools on occasion, about 2x a month. Lately he doesn't have much of an appetite. He drinks his soy milk and has some snacks and that's about it. He may have a bowl of oatmeal or a waffle, or maybe mac & cheese later in the day, but other than that, not much else. He's 36 inches and weighs 31 lbs. He screams when we change him because he's so uncomfortble and his little private hurts. I've been putting lamisal powder on it for the past couple of days since he doesn't want anyone to touch it. I figured the wipes were enough. Anyway sorry so long and again, any info is greatly appreciated.

Becky

[Guest nini]

sounds a lot like what we went through with my daughter. Once I put her on a strict gluten free diet ALL of her problems went away. If she is accidentally exposed to ANY gluten she has an immediate and severe reaction. I do not need any Dr. to tell me she has a problem with gluten, I KNOW she does.

I can remember my poor babies bleeding and raw bottom, she had reflux from birth, diarrhea and constipation, refused to eat, failure to thrive, anemia, hypoglycemia, etc... Now she is a perfectly healthy five year old and she loves her gluten free diet.

good luck with it all... we hate seeing our little ones in pain.

[Sk8ing]

Hello "Avery and Evan's Mom",

One other thing to say on allergy tests: I did an elimination diet, but had been sick for so long, I didn't recognize symptoms as anything making me feel worse. (I mean that feeling bad felt perfectly normal to me.) My intolerance to dairy products is severe - off the charts, even - but when doing the diet, I thought I felt the best the day I tested dairy because it made me feel "hyper" (seemed like an energy boost at the time!). The intolerances would build up so that every couple of weeks I'd spend the entire night vomiting. Anyway, I followed the diet up with a blood test, which confirmed everything, was quick, and worked great. I would recommend it over the diet, but then we're all wired differently.

[Merika]

Hi Becky,

The only other "standard medical" option to biopsy is the blood test. Possibly an allergist would perform this, or a pediatrician or specialist. It's a simple test, and I've heard will be replacing the biopsy in children soon - assuming the doc runs the full panel and not just one or two markers (which I've heard enough of on this board of docs doing just that).

Any medical procedure or test can be scary. (((((hugs)))) but knowing the results can be well worth it. It's up to you.....

Merika

[jenvan]

Becky-

I'd opt for the doctor or start with elmination diet if you are set against it. If it is Celiac, which symptoms are consistent with, an allergist will be of no help. The harder choice up front may be easier long term. Good luck!

[taweavmo3]

One thing you could try immediately, while you decide on what to do for the big picture, is to cut out the soymilk. My toddler has an allergy to dairy, and I never knew that 50% of dairy allergic kids also have problems with soy. I learned that little nugget here, thankfully.

I quit giving Ben his soy, and his yeast infections cleared up quickly. Now if he has any soy, he has a stronger reaction than he does with milk! Amazing the doc never told me this after 8 months of our frequent visits for diarrhea. That has cleared up too w/out the soy. So, you may want to at least give that a go until you can do more.

As far as the biopsy versus allergy doc...that's a toughie. Has he had the blood test already? The biopsy was relatively easy for my 3 year old, but if either of my other two children showed + on the blood test, I wouldn't put them through it. Mainly b/c if either came back negative, I wouldn't trust the results anyway, and the end result no matter what would be a gluten free diet. Does that make any sense, lol??? You could try the bloodtest before making him gluten free, just to cover your bases. Then put him on the diet and see what happens. Until they develop a more accurate way of testing for celiac or gluten intolerance in kids, I think the real gold standard is a diet challenge.

Good luck with what you decide!