Nasal Polyps

[Jnkmnky]

Could nasal polyps be attributed to gluten intolerance???? My 7 year old celiac disease kid has always had bloody noses. I thought it was due to gluten or some other sensitivity since I'd had him looked at and they said they saw nothing. So today I took him in because he's had a bloody nose for a week - on and off. They tell me he has polyps. So I looked them up and see they can be related to allergies. Knowing gluten intolerance is NOT an allergy, I was wondering if it's a condition related to celiac disease. Or are there lots of cders out there with bloody noses and polyps? Just wondering. It's not life-threatening, so I'm not all that upset. Just curious.

[Jnkmnky]

The school nurse told me that nasal polyps are often related to allergies. Does anyone out there have the polyps? If so, what types of things are you allergic to or do you attribute your nasal polyps to? I know the CF connection and am trying not to think about that one at all. The dr is setting up the chloride sweat patch test now to rule that OUT. I'm focusing on an allergy as the cause but don't know where to begin. Food, environmental? Which is more likely? Where do I being to look? That kind of thing. Does an allergy test identify the cause? Or only help to isolate possible causes?

[Kasey'sMom]

Hi

I know you must be overwhelmed right now. I'm not sure if there is a link, but allergies are considered an auto-immune disorder. Several people in my family had celiac disease and most of us have allergies as well. Allergies often run in families.

My father has had nasal polyps several times and has had them removed. He also has allergic rhinitis caused by inhalent allergies. He does have food allergies as well.

My allergist suspected that I might have polyps but after having testing, it showed chronic sinusitus. I have severe allergic rhinitis which over the last few years has become serious. I'm blessed to have an attentive allergist. However, I wish he would have looked at celiac disease but he was the one who found my dd.

Skin testing or prick testing is pretty accurate for inhalent allergies. The debate of accuracy for food allergy testing is still out. My dd and I have both had prick testing and I've had ID's as well. My dd also had the RAST blood test YORK (Igg) testing. Each test that we've had a test done it reveled something different. We've both had nasal smears which determined that mucus is being produced. The mucus just hasn't formed into polyps.

Have you noticed that your son is worse at a particular time of year? Does he have a runny nose, coughing or stuffy nose? Does his nose become inflammed and bloody after he's around animals or playing outside. I tried to keep a little journal about our symptoms and when they occured. That was really helpful for our allergist. They have several nasal corticosteroids that help reduce the swelling of the sinus cavities as well as second generation anti-histamines that help control the allergen, without the traditional side-effects. We have made some adjustments to our house to help minimize our allergens as much as possible.

Typically inhalent allergies produce symptoms in the sinusis. However, some people also can have a runny nose etc. with food allergies. My dd typically has a runny nose and sneezing with mold and grass, as well as eczema. Food triggers her eczema and causes digestive complaints. Some people do have drainage etc. from foods as well. I have anaphylatic reactions from both my inhalent and food allergies.

You might find that it would be helpful to test for both inhalents and foods. The theroy is different for young children. My allergist said that infants and very young children are more likely to have food allergies. He was shocked when my 2 1/2 year old tested positived for inhalents. Typically children around 2 years of age and younger haven't had as much exsposure to ragweed etc. As we know typical doesn't always fit our profile.

Pleas feel free to PM or e-mail me.

Here's is a link on the nasal polyps.

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[Jnkmnky]

Thanks for the info...and the calming tone. Yes, I'm a little shocked by that disease being mentioned ... It so happens that 4 years ago when my son was dx with celiac disease, the first thing they thought he had was cf. I was like --- "I'd like to look into the Celiac a little more...." That's one of the reasons I've been so "happy" he has celiac disease. Just thinking of the alternatives. HOPEFULLY, we can begin the freakin sweat test by tomorrow, move on away from that possibility asap and focus on which allergen caused the polyps. Until then, I'm not sleeping much! How's your dad feel about the polyps? Cause him any major problems? Change the quality of his life much?

[Bette]

Jnkmnky,

I just wanted to say good luck with the sweat choloride test and try not to worry that much, thinking it is cystic fibrosis. My daughter (11) just had it done less than 2 weeks ago. Just this past summer as her GI was evaluating whether or not she has celiac, her ENT doctor,who was evaluting her at the same time,was shocked at the tissue damage in her sinuses. She was referred to him because she has tonsills that I kid you not are as huge as golf balls. Little did we know that her sinuses were in such bad shape too. He was shocked when he got the results of the ct scan. He basically told me he has not seen sinuses that severe in an 11 year old unless something else was going on, cf some kind of immune defiency etc. I too also got scared when he started mentiong cf, but knew that its just part of trying to rule everything out.

She also has nasal polyps and nose bleeds from time to time. She had been skin allergy tested a couple of years ago, with just some mild reactions to some ragweeds and mold. So allergy shots were started on her, and she reacted very badly to her very first shot. She broke out in a rash, that the doctors actually diagnosed and treated as Shingles. She was put on antiviral meds, this rash lasted more that a year. It wasn't until her labs for celiac came back all elevated, that I realized that this rash could possibly be DH and not shingles. At the time she was being evaluted for celiac the rash was gone, so the gi doctor never got to see it. She has been gluten free since July and thankfully the rash has not returned.

Her ENT does not want to rush into surgery since we don't know what is causing her chronic sinusitis and enlarged tonsills. When he found out about the the celiac he agreed that we should wait at least 6 months to see if going gluten free will help with her sinuses. But he was adamant about checking for cf, and she will also be referred to an immuniologist. The good news so far, her sweat choloride test was negative. Her tonsills (just 2 weeks ago) are not as red and inflammed, although they are still enlarged. He feels there is improvement. We won't know about any improvement in the sinuses until he repeats the cat scan, at the end of the year. Now I know she still has some issues with seasonal allergies as both of us have been having trouble in the past week, and she came home just yesterday, with yet another nose bleed. But I feel it is also important to give the gluten-free diet some time too.

There is a lot of talk about finding out if there are other allergies or intolerances going on, and that is where I am at now. Since going through the skin allergy testing is out of the question for my daughter I was thinking of looking into the 2 labs that are talked about a lot here, Enterolabs and York. But I am still confused as to which lab we should use.

Let us know how the sweat chloride test goes, and please keep us posted!!

Bette

[Kasey'sMom]

My dad has really done well with his allergies and polyps since he has gotten older. He also did really good with surgery to remove the polyps. He took allergy shots as well has nasal sprays and anti-histamines for several years. He stopped taking the allergy shots and does really well now with the occastional nasal spray and allergy med.

I really wish my parents had taken a more aggresive approach with my allergies when I was young. The did put me through a GI series when I was 10 but I didn't have any allergy testing until a few years ago. They didn't want to put me through it since I was scared of needles.

My dd did great with skin testing and she was 2 1/2. I had skin testing and did OK with the tests on my back but the ID's in my arms caused me to react. The gave me epinephrine and read the results at the same time

Now I do great and I even take allergy shots. My allergist is about 2 hours away but it's worth the drive. He started me very, VERY, slow on allergy shots. I've had a few reactions along the way and we've had to back up and dilute/repeat vials. They mail the vials to me and I get my shot locally. I started out a 1 1/100,000,000 strength and had a reaction and they had to dilute me to 1/500,000,000. Two years later I'm still taking weekly shots but I've worked up to 1/000 strength. I also take Xolair which is an anti-Ige anti-body injection. The injection has helped me get me life back and has been a huge blessing. The injection can have complications but right now the benefits outway the risks!!I hope to eventually get off Xolair and just do shots.

I think some immunologists are now doing allergy drops.

Hopefully, you'll find some answers soon. You'll be in our thoughts and prayers.

[Jnkmnky]

Thanks. I changed my doctor today because they told me schedualing the tests ...One, they've never done this b4 so they have to find out who does the testing and two, the person who does the schedualing is very busy and the office is closed on fridays....so I'll have to wait until sometime next week for them to come up with a referral to the ent and the for the chloride sweat test This after telling me this crap, making me worried, telling me they'd call me today with the testing info.... I actually had to call THEM today because they didn't call me back like they said they would. Totally worthless. I wouldn't dare repeat what I said to them. I can get very nasty when sleep deprived and worried about my child. I can't believe the casual attitude after telling me this could be serious.

I feel like they enjoy the roller coaster of worry they see me riding.

- Testing will be on hold until my first appt with the new guy...not a dr, but a DO *I hear he's good from some ladies in town with special needs kids*, and the new guy works in a large hospital with lots of specialty docs. Hopefully, he'll be less "hurry up and wait". Our appt is this monday after school.

Until then, I'm being slightly insane. I actually licked my son's arm when he was sleeping to see if he tasted salty. He didn't I'm going over things like the fact that he's had pneumonia, been hospitalized for breathing problems, just had a bout of breathing problems.... HOWEVER, I don't see anything else that would indicate CF and lots of kids get sick with chest colds etc. I feel pretty sure it's an allergy issue + inflamation due to the recent sickness he had. PLUS, you guys have these ultra-calming posts here for me to read several times a day to take the edge off. Thanks! I really appreciate the kindness.

[Jnkmnky]

So I saw the new dr today... he said spelt, oats and sprouted grains are safe for celiac.... Ok, I sure can pick`um. He was nice, though. He looked at my son and said he didn't even see the polyps the other dr was talking about. Now that just ticked me off. As the decompression began, I realized how tightly wound I've been for a solid week. He said there was a clot and probably a vein problem causing all the nose bleeds, referred me to the ent at Children's. Very efficient. I'm waiting for the ent to confirm the nasal polyp non-existence before I scold the first dr. I mean, what is it with the bad medicine available to all for a fee? I'm so mad that she got me all worried and a second opinion tells me there's NO polyps. That's just bad medicine on her part. The new dr also said he doesn't feel a cf test is necessary. He said that EVEN IF my son has cf, it's a mild case and there's nothing I'd end up doing differently on a day to day basis. He asked me if my son is healthy otherwise... I said yes. He said he'd refer me for the test if I want it, but that he wouldn't bother unless there's a significant change at some point. Now, to some that may sound like bad medicine, but to me-- it sounds reasonable. It's not the cost of the testing, it's more that nothing but KNOWING would change for now. No thanks. I don't want to know. Certainly not if I can't do anything about it. Anyway, I don't believe he has cf. I didn't when they suggested it years back and I still don't. Honestly, I can't deal with cf. I have my limits.

[gf4life]

Jnkmnky,

So sorry to read about all that you have been going through. I've been off the board lately, and so I missed all the earlier posts. I sure do hope that the ENT is much more informed than the other doctors.

That said, here is what I have to share about nasal polyps.

My son is 9. He has had 2 sinus surgeries. His polyps grow inside the maxillary sinus cavity. Those cannot be seen looking into the nose, only in a CT scan and through the little camera tube when they go into the sinus.

He has never had a lot of nose bleeds, but an occasional one. The interesting part is that the nose bleeds are usually on the right side and his polyps are on the left.

He was diagnosed this way: He got frequent headaches and fevers. The pediatrician had no idea about the fevers, but referred him to a Neurologist for the headaches. The neurologist was running tests and wanted to see if the headaches/fevers were caused by a chronic sinus problem. So he ordered a sinus x-ray to be done during his next fever episode. He was in Kindergarten then. I was told that no news is good news and they would only call if there was a problem. No one called so I figured the x-ray was clear. About 6 months later I had him in the pediatricians office and the physicians assistant says, "what ever happened with his sinuses". What do you mean? I asked. He said that the x-ray showed the left sinus cavity was filled with something. So I called the neurologist and he said he didn't think it was anything serious, but he was still getting the headaches so he orders an MRI.

So my son, a 1st grader who NEVER could hold still for 5 seconds, lays on the MRI table for 20 minutes without moving a muscle, just so he wouldn't have to get poked with a needle! The MRI showed the left sinus was filled. They brushed it of as "residual congestion" due to the fact that he had a cold 3 weeks earlier. I wouldn't let it drop and I asked for a referral to the ENT. He said you can't tell what is really going on without a CT scan. The CT scan showed the entire left sinus was completely closed off and filled with tissue (not mucus). So we scheduled him for surgery. He was 7. The first surgery opened him up and that is when the doctor found 4 huge polyps. He pulled them out and cleaned out as much tissue as possible without damaging his sinus cavity.

6 months later the follow up CT scan revealed that the polyps had regrown already. The doctor was not happy. He thought about it and since my son has asthma AND nasal polyps, he considered that he might have Aspirin Triad Disease. Basically, you are allergic to aspirin(and by default sensitive to salicylates, which is what aspirin is derived from) and the aspirin causes the asthma and nasal polyps. Since he was using children's motrin at the suggestion of the neurologist, as well as pepto bismol (bismuth salicylate) for the tummy problems it was quite possible. So we took him off all meds that contained aspirin and salicylates, and limit his consumption of foods high in salicylates. He was found to be gluten intolerant and started the gluten-free diet 2 months after his first surgery, so he didn't need the tummy meds so much anymore anyhow. So 1 year after his first surgery he had his second. The doctor removed all the polyps and as much tissue he could and said we might have to do another surgery when he is a teenager (at least 5 years later) when his facial bones grow more and they can get to the lower curve of the sinus. He just had his 6 month CT scan and follow-up this summer and his sinus is clear (except for the extra tissue in the lower curve), but NO polyps! Yeah! So either it is the aspirin triad thing, or the gluten-free diet, or just his body choosing not to grow any more polyps, but what ever it is I am glad. We continue to assume he had an aspirin allergy for safetly reasons, and he will stay gluten-free.

Now his tonsils, which were always small and normal, are huge and have deep pockets in them. They weren't like this 4 months ago, and he has been coughing all summer. So they might need to come out. I had to tease my son about it. Does he really have to have a surgery EVERY year?! He has a follow-up in December and if his tonsils are still giving him a problem, then we will take them out.

Well that is my (and Jacob's) story. Hopefully the polyps won't give him too much trouble. He doesn't have much in the way of seasonal allergies, and you can only test for a aspirin allergy by taking him off the Singulair (for the asthma) and putting him on high doses of aspirin to see if it induces an asthma attack. I said NO. If he chooses to go that route when he is older, then he can. But I will not do that to my child. It is not that hard to avoid aspirin.

I hope your son is fine. Jacob had the CF sweat test, and he was fine. I would just see what the ENT has to say.

God bless,

Mariann

[Jnkmnky]

limit his consumption of foods high in salicylates

Wow! That's a lot to deal with... I'm still unwinding from the recent worry. At least you're finding humor in your situation. Eventually, I will too- but for now I'm really annoyed that the first dr "found" something for me to worry about. Our new guy is way laid back. That could be a good thing or bad thing. We'll see. Could you tell me what foods contain salicylates? I've never given him asprin, but maybe I give him food with salicylates. I just don't know.

[elisabet]

Could nasal polyps be attributed to gluten intolerance????  My 7 year old celiac disease kid has always had bloody noses.  I thought it was due to gluten or some other sensitivity since I'd had him looked at and they said they saw nothing.  So today I took him in because he's had a bloody nose for a week - on and off.  They tell me he has polyps.  So I looked them up and see they can be related to allergies.  Knowing gluten intolerance is NOT an allergy, I was wondering if it's a condition related to celiac disease.  Or are there lots of cders out there with bloody noses and polyps?  Just wondering.  It's not life-threatening, so I'm not all that upset.  Just curious.

<{POST_SNAPBACK}>

My son had nasal polyps as well,after Gluten-free Casein-free diet ,nasal polyps dosent exist any more.

It is amazing.poor him had really big problems,there were nights he didn t sleep at all.

[gf4life]

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The list of foods containing salicylates are found at the links above.

Does your son also have asthma? He would have to have asthma too for the aspirin triad disease to be there. You can be sensitive to salicylates though and not have asthma. I don't know if it would still cause nasal polyps though.

Jacob has had so many different things come up with regards to his health. I just thank God everyday that none of them are serious or life threatening (as long as they are treated) and we have them under control for now. I quess you could say that I have just learned to accept them and count our blessings. I have been where you are though. The not knowing and the worrying (read this as sleepless nights!) were horrible. I am glad to be past that.

God bless,

Mariann