Allergy Help

Discussion in 'Healthful Living / Natural Treatments' started by Loving Abbey 2, Mar 7, 2008.

  1. Loving Abbey 2

    Loving Abbey 2 Not really a Newbie

    Hi everyone,

    I was on here a long time ago as LovingAbbey, but couldn't log in again. So I'm back with a problem of course!

    Here's the short version of a very long situation:

    From birth difficult child had digestive issues (but gained weight and grew). Colic with nursing, continued with soy formula, etc. Around toddlerhood, chronic ear infections until on claritin--with return of symptoms whenever it was d/c'd. Eczema in winter and on skin with contact from acidic foods. Age 4 testing through Naturopath indicated the food allgeries below via a blood test. Change in diet relieved digestive issues, mild improvment in bx, and lessened eczema. Age 6 sinus infections started with some relief from Singular. Age 8-sinus infections increasing again, relief from an increase in Singular and d/c of claritin. Age 8 digestive issues resurface-consitpation and diarrha, encopresis, intense stomach pains, etc. GI doctor resolved bowel movement issues, except for stomach pain, which are real pains. New Allergiest does an updated blood allergy testing for food and environmental. All screens for celiacs, Crohns, food and environmental allergies come back negative.

    Neither doctor can account for symptoms. GI doctor said maybe her immune system is "confused" is has a mild reaction to those things. Neither can suggest any treatment or diagnosis, or even another type of doctor to go to. Needless to say I'm very frustrated!

    Does anyone have any ideas of something that looks like allergies but it not? Or a type of doctor that may be able to help sort this out?
     
  2. tiredmommy

    tiredmommy Site Moderator

    Michelle- We found our best allergy treatment was to use provocation neutralization testing and therapy. It's experimental, not covered by insurance and very expensive. Duckie had reactions to everything she was tested for. Her immune system was hay-wired. She received twice weekly desensitizing shots and we followed a strict four day rotation diet. It helped her greatly. I don't want to say that I outright endorse it because it is a little controversial, but you may want to research it. She now suffers from seasonal allergies, dust mites, mold and is borderline allergic to soy. It's a big difference.
    Also, Duckie's current allergist recommended that she start all seasonal allergy medications in early March each year when the maple trees begin to pollinate. He explained that her relatively mild reaction primes her up for a bigger reaction to the next pollen... oak around here. He also has her wash her nasal passages with saline solutions twice daily. It helps quite a bit especially in the dry winter air.
     
  3. Josie

    Josie Active Member

    In my experience, the celiac tests don't rule out a problem with gluten. It may mean, by definition, no celiac disease but eliminating gluten may eliminate the problem. My younger daughter complained of stomach pain until she was 8 and we removed all traces of gluten from her diet. She had several celiac blood tests done over the years which were all negative. We then discovered her stomach hurt when she had soy and milk, too.

    I did testing at www.Enterolab.com. They test for gluten, casein, soy, eggs, and yeast. The test gave me the incentive to try eliminating all gluten but it was the diet results that convinced me. So you could save the money and just try the diet.

    At www.celiac.com, probably half the people don't have an official diagnosis of celiac disease but are gluten free anyway.

    I recently did food allergy testing for my daughter, and she didn't have an allergy to gluten. I asked them about it and they said there were different responses for allergies/intolerances.
     
  4. Loving Abbey 2

    Loving Abbey 2 Not really a Newbie

    Well right now she is on a gluten-free, dairy-free, egg-free, and yeast-free diet and she is still having stomach pains. She's been gluten free for 4 years (and free of all other foods listed in the signature). Dairy (lactose, whey, and casine) free for 6 years. It just seem like there is more going on. So given the testing coming back negative, I tried giving her a scrambled egg (with soy milk). And she got sick, so she may not test "allergic" to eggs, they clearly make her sick. I don't want to make her sick, but I think I may have to trial at least some of the foods she has been restricted from for so long. I don't know though.

    The allergist doesn't even want to see us again. All her seasonal and environmental tests came back negative. He says some people just have a runny nose. He really wasn't listening to the extent of her "allergy" symptoms-food or environmental.

    I need like a nicer version of "Dr. House" to figure this stuff out. I am not married to the idea of her having allergies, but she has the symptoms. So it seems to me like there must be a cause for all these lifelong symptoms and maybe a way to fix it. Being on laxatives, allergy medication, and a very restrictive diet, doesn't seem like the BEST option for the rest of difficult child's life. You know?
     
  5. tiredmommy

    tiredmommy Site Moderator

    Has she seen a gastroenterologist?
     
  6. Josie

    Josie Active Member

    When my daughter was gluten free and I wasn't, I fed her a lot of things that I wouldn't eat now. We ate in restaurants and ordered gluten free and I assumed it would be mostly ok. Now, since I am gluten free, I can tell that at least half the time, there really is some gluten in it. I've called about foods that appear to be gluten free, only to be told there is gluten "flying around the plant". I know that all 3 of us who are gluten free in my house react to foods that say "may contain traces of wheat". So if you are not extremely strict about being gluten free, it might help to really watch for it. I only mention this because I thought I was being good about it before but I see from my own experience that cross contamination really matters.

    I also took my daughter to an environmental physician. The one I saw seemed very interested in finding the cause of her emotional problems and believed it was allergy related. I think he did the same kind of testing that tiredmommy's doctor did. Unfortunately, he has dropped her as a patient because of her Lyme Disease so I can't say if he would have been sucessful in his treatment. An Environmental Physician might be helpful to you, though.
     
  7. Lothlorien

    Lothlorien Active Member Staff Member

    Have you tried looking for a good Homeopath in your area? I know they are hard to find. They do not generally accept insurances, but they are very good at figuring this stuff out. I'm curious to know if she's been tested for porphyria?
     
  8. mom_in_training

    mom_in_training New Member

    try looking through this forum... Just maybe you will see something that coincides with whats going on with your difficult child. This medhelp is amazing, It pretty much covers everything. Some areas you can actually message a Dr and others would be posts from parents or just people that are experiencing the same things that another is going through. My daughter just had her whole thyroid removed in Feb 2008 and believe me I have learned soooo much info through medhelp from others that have actually been there done that.

    http://www.medhelp.org/forums/show/67
     
  9. SRL

    SRL Active Member

    Abbey, is she currently on Lithium, Abilify, Seroquel, and Propanalol or is that a list of medications you've tried? I would consider those as possible triggers for digestive problems. I'd also mention that when I had digestive problems from stress and anxiety in my younger days the pains were very real pains.

    I will mention to you that my difficult child had early ear problems and had tubes put in at 4 1/2 months of age. He was very susceptible to colds and it seemed like I was constantly battling those throughout his early years. A family history of allergies along with persistent post nasal drip made us believe that he had allergy problems but after rast testing, two sinus surgeries, an observation log, and a lot of trial and error with medications, what I discovered was that allergies played only a minor--if any role at all. What his trouble is is that even a minor cold can trigger a low grade sinus infection with post nasal drip which looks a lot more like allergy than a full blown green gunky sinus infection. Sinus surgery gave his sinuses and clean start and the second time around we found the right treatment plan: medicating aggressively during colds with both Singulaire and Extendryl and then if he isn't clear within 7-10 days starting an antiobiotic and if needed, prednisone. He's gone 4 1/2 years without a serious sinus infection since we've gone this route with only occasional low level drainage in between.

    I know this isn't the "natural treatment" answer you were looking for but there were enough similarities that I thought I'd toss it out. In my difficult child's case, medicating aggressively up front has resulted in a reduction of medication overall.


     
  10. mom_in_training

    mom_in_training New Member

  11. Josie

    Josie Active Member

    You could also try an Integrative Physician. I have not tried one but they use traditional and alternative medicine.
     
  12. Loving Abbey 2

    Loving Abbey 2 Not really a Newbie

    What is Porphyria? I'll have to look into the other physican's mentioned below to see what my insurance covers. I can barely afford all of the copays for the docs who are covered, nevermind one who is not.

    She has a Pedi GI doctor, who really only solved the encopresis. I have been very strict about the food she eats, unless it's fresh fruits and vegetables, I prepare it all. We rarely ever eat out.

    SRL what type of doctor figured out the sinus stuff? Stress and Anxiety is something I think I may need to watch more closely for in relation to the pains.

    I will check out that site, mom in training.

    As for the medications, yes those are the ones she is currently on. (The list of what she has been on is very very long!) She's been on the lithium for a few years without much change. The seroquel was the one the psychiatrist thought could have the biggest effect on the stomach. So we're tappering her off. She was on 400mg per day and now we are down to 100mg, soon to drop to 50. The Abilify is new during the last 6 mos, and the stomach stuff got worse before we even started it. And the propranlol is very new.

    Thanks Everyone!!
     
  13. SRL

    SRL Active Member

    It was an ear, nose and throat specialist. He did a CT scan which showed chronically inflamed tissue. I'd had the surgery done to both rout out the inflamed tissue and in my case correct a deviated septum so I knew how helpful it could be. In difficult child's case it did help but because we didn't have the right treatment plan returned again after a flareup. The second time around we nailed it right thought. The ENT's a good listener so when I called in and said he needed an antibiotic and prednisone he'd call it in instead of making me wait the two weeks or whatever for an appointment which helped enormously.
     
  14. Lothlorien

    Lothlorien Active Member Staff Member

    http://digestive.niddk.nih.gov/ddiseases/pubs/porphyria/

    This is a link to an explanation of general Porphyria. I don't think they included a list of symptoms, because there are different types. My aunt has it. Certain foods and medications trigger it as well as hormones. As she is getting older and going through the stages of menopause, her triggers have become substantially less. Basically, if she eats or drinks one of the trigger foods/drinks/medications, she is in the bathroom and can actually pass out from evacuating everything in her body at once. It is related to a seizure disorder also (not exactly sure how, but an aura is usually felt just before she has an attack and she did have a seizure disorder as a child)

    Also, something to watch out for......Missy gets stomach pains just before a seizure. I believe that is the aura that she experiences. At this point, I don't think she has porphyria, but will be keeping a close eye on it and will be testing her in the years to come, as it is a highly genetic disorder and is commonly missed because most symptoms lead to seeking our other issues like irritable bowel.
     
  15. Lothlorien

    Lothlorien Active Member Staff Member

    Oh, and I wanted to add that my aunt suffered with these problems early on and was labeled "sickly" and as she got older the problems worsened. She was hospitalized at one point, had intestinal surgery and was never diagnosed until a few years ago. Purple or orange urine is one of the major symtpoms and if that is not present, docs don't test for it. My aunt never had colorful urine, so it went undetected until she was in her fortys. She works at a major hospital and was discussing it with someone who had done his thesis on Porphyria and he knew exactly what it was.
     
  16. Josie

    Josie Active Member

    Since your child is gluten free, you could post your question at www.glutenfreeforum.com. Many of those people have lots of experience with stomach problems. Some of them go beyond gluten intolerance. You might get some other ideas there.
     
  17. scent of cedar

    scent of cedar New Member

  18. Loving Abbey 2

    Loving Abbey 2 Not really a Newbie

    Thanks for all the websites, I've been browsing, haven't posted a question on them yet. BUT has anyone heard of "Leaky gut syndrome"? Some of the symptoms seem to match up-especially since they also include rashes. I haven't been able to find an actual test for it though, just symptoms and recommended treatments options.
     
  19. smallworld

    smallworld Moderator

    Hi, has Abbey ever had an upper endoscopy? Biopsies taken during the procedure can more accurately rule in or out celiac as well as other digestive disorders more accurately than blood work.
     
  20. Josie

    Josie Active Member

    I've heard about leaky gut but I don't know enough to know about testing. The treatments that I've read about seem like they would be easy enough to try on your own.

    If your daughter is already on the gluten free diet, a negative biopsy wouldn't rule out celiac disease.
     
Loading...