The Never-ending Allergy Testing

Jacob had another allergy test done today. This was the one I hoped to do after his August allergy test removed Broccoli, Coconut, Apple, Lemon, Potato, and Turkey from the rotation. After getting these results, I went home and made a list of everything left in his diet that had not been tested yet. I needed to make sure we were not replacing one allergen with another, so requested another test to be done. There was about 50 foods to be tested, but on a just 3-year-old, there is only so much skin available on their back to do the tests. Jacob had 30 foods tested today. These are the allergens added to his list :

  • Banana
  • Grape
  • Orange
  • Buckwheat
  • Amaranth
  • Sorghum
  • Quinoa
  • Millet
  • Hemp [Hemp Milk]
  • Mustard
  • Summer Squash
  • Pumpkin
  • Cod
  • Haddock
  • RICE
  • Chicken

So essentially there is NO grain nor protein that is ‘safe’.  He tested fine still for shrimp and lobster, but these being part of the top 8 allergens, and considered to be part of the EoE elimination diet- I am more than leery of adding these to the mix. Especially since it does seem that he is reacting to everything he is eating.  I have a short list of foods we tested that seem to be ok, [but for how long?] these include: carrot, blueberry, avocado, tomato, cantaloupe, cranberries, pineapple, pear, raspberry, prune, cinnamon, chia, arrowroot, tapioca, sweet potato; salmon[was ok when tested in Aug. so?], [and lobster and shrimp]. Hardly a complete menu.

Foods that he has yet to be tested include: ginger, vanilla, onion, garlic, winter squash, celery, cucumber, spinach/kale, cabbage, cauliflower,  peach, apricot, mango, grapefruit, cherry; salmon & black olive [retest], [maybe test: palm, cane, yeast]. and after that- there really isn’t anything left.

So, what do we do now? That is the question. At this point, the GI feeding tube is looking more and more like the logical next step. I am very concerned about the gaping holes in Jacob’s diet nutritionally. I meet later this week with a nutritionist to discuss these concerns; and am awaiting a call from our GI doc to try to figure out what we are to do now. We are to have another GI scope in about 3 weeks to see if/how the Budesonide has treated the EoE flare. I am concerned at this point because even having been on it for 5 weeks I still have been seeing coughing and choking when he is eating, so not overly optimistic the scope results will be good if we were to do it now. We may see some improvements now that we are taking MORE things from the diet rotation. Honestly, at this point and time, I am prepared to accept the need for a feeding tube, as much as it breaks my heart to put him through even more medical procedures. I am at a loss, and just want him to be healthy, and to not be responsible for feeding him foods that are making him sick. I will update when once the next decisions and steps are figured out.

 

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10 Responses to The Never-ending Allergy Testing

  1. Ewokmama September 24, 2012 at 10:08 pm #

    Wow. I just never even knew that the scope of food allergies could get there – where someone would need a feeding tube for all of their nourishment! That’s terrible. I feel for you guys!

    It sounds like there needs to be more research surrounding food allergies. Are there some major organizations doing that? I hope so. When a person can’t EAT, that’s a huge problem!

    • Multiple Food Allergy Help September 24, 2012 at 10:40 pm #

      I know! This is so overwhelming to me too! There are a few really good national organizations who offer support and research for GI diseases like EoE and FPIES. The American Partnership for for Eosinophilic Disease is os one such group. APFED is a 501(c)3 non-profit patient advocacy organization dedicated to patients and their families coping with eosinophilic disorders. APFED strives to expand education, create awareness, and fund research while promoting advocacy among its members. [www.apfed.org]. I also have found through FB and Twitter, an AMAZING network of others who have more experience traveling this road than I have; and they have been insanely generous with their knowledge and support! XO ~Jenny

  2. Nicole September 25, 2012 at 2:49 am #

    I am newer to your blog so I don’t know your full story, but let me share a little with you. I have a son who has food allergies and sensitivities and has been diagnosed with EoE. My son is 6-1/2 and is Developmentally Delayed. Not one to just accept his fate I have been looking into oth options to help him lead as normal of a life as possible.
    My son had difficulties eating, food allergies and a feeding tube recommended by the Gastro Doc. We chose to skip the feeding tube. Every time I looked at his belly I cried at the thought of him having a hole in his torso. At times my son lived pretty much exclusively on yogurt, or special bars I make for him. I still have a hard time getting him to eat food he needs to eat. However, my son’s list seems much smaller than your at only 19 food eliminated, and he can still eat meats.
    I found a program for my son because of his delay called Brain Balance. At Brain Balance they require a blood and urine test and you also work with a Nutritionist. I had never considered this before. They do a thorough test which I think is a triad screen and they check the vitamin levels and metabolic function and also for leaky gut. When people have a long list of foods that are not tolerated this can indicate a leaky gut, where the foods are leaking into the body and then causing a reaction. From my understanding, once the gut is healed the body should tolerate the foods again. Under the circumstances, I would think you could easily get a referral to a Nutritionist and have your insurance pay for it, although you’d want to check it out. I wish I would have thought to go to a Nutritionist years ago, but it didn’t even cross my mind.
    My son had been to the Feeding Clinic at the local Childen’s Hospital and as far as I know they don’t do this blood and urine test. If they do, they never mentioned it.
    The Nutritionist also recommended custom vitamins based on the lab results, which we did along with custom amino acids. The testing they do for food sensitivities is different than food allergies, since some foods my son gets hives from did not come back as a problem. We have decided to avoid the sensitive foods for 6 months and then we are going to retest. For the sensitivities, they recommended we introduce the foods back to see if there is any noted changes. We have decided to introduce the foods for about 2 weeks just before we retest, and then plan on just staying away from the foods altogether. My son has enough going on Isis body that we just don’t need food bothering his bodies in ways we aren’t aware of, for example, maybe they also contribute to the EoE.
    Okay, a little long winded, but thought if you hadn’t checked out a Nutritionist yet, maybe it is something you would like to explore. I find they are helpful and have given me ideas of foods to try and some recipes.
    You are doing a great job advocating for your son. He is blessed to have a Mom who is so dedicated to helping him. Keep up the good work Mom!

    • Multiple Food Allergy Help September 25, 2012 at 12:12 pm #

      Thank you so much for this information! I am not that familiar with “Leaky Gut Syndrome,” I have read some about it, but have not done much deep research yet! I am meeting Thursday with a nutritionist recommended by my GI doc. I am looking forward to this- as I am very concerned about trying to meet Jacob’s nutritional needs. You have given me some great questions to bring up. My allergist mentioned that maybe something else is going on with Jacob, but he did not elaborate any further- your post makes me think this may be what he was alluding to? I will certainly be taking notes at this appointment! Thank you so much again for responding! Sincerely, Jenny

  3. Name* September 25, 2012 at 12:51 pm #

    I have multiple food Allergies it makes my mom nuts with all the diets I’ve been on the elemental formula really isn’t that bad they have flavors now and it helps tremendously

  4. Judy October 5, 2012 at 8:19 pm #

    I have had problems all my life with gastrointestinal issues, asthma, and migraines. About 10 years ago we made a discovery of nut allergy because of wheezing after starting a new medication. The allergist did two of the newer RAST tests and discovered that I was allergic to nearly the entire legume family as well as the nightshade and most grains. Elimination of the worst offenders was a miraculous thing. All the sudden the misery I’d experienced since infancy was nearly gone. I do eat foods that I know I am allergic to, but only those with milder symptoms. I cook from scratch, carry an epi pen and ignore the so-called experts who are skeptical of allergies to food. It sounds like you have good doctors who will work with you. I eat chicken zucchini, salad and veggies. I am not allergic to milk and eggs so i feel my diet is pretty healthy. I also cook totally from scratch and only eat out at specific restaurants where I know the menu. If a feeding tube helps it isn’t the worst thing. After forty years of misery, medications and misdiagnosis, I think your son is lucky to know.

  5. Sher October 31, 2012 at 9:45 pm #

    You have my deepest sympathies. I went through multiple food allergies myself and now with my mom. She may end up with nothing to eat at all soon as she is so limited and so has to eat foods several days and times in a row and then develops sensitivities to those. I was lucky to have an MD that understood and helped me with some medication that suppresses mast cells in the stomach and gave me a bit of breathing room until I could get my leaky gut under control. My mom doesn’t have the same support and lives far away from me.

    As a light-hearted comment only, I think it might be a bit easier having kids with multiple food allergies than a cantankerous 70 yr old who doesn’t want to give up her years of eating pickles (onion, garlic and mold allergies), poultry seasoning for turkey (mint family allergies), eggs and cheese (egg and mold and possible dairy allergy) and who can drive out and buy everything that you have thrown away so it wouldn’t be in her house to tempt her (even though her mouth blisters up and she can’t walk because of the swelling in her feet and body when she eats it!)

    Good luck in your journey! Though it isn’t evident right now, there are some real gems to gain. One is your son will grow up knowing that the body is a machine and needs to be given proper nutrition to function. Eating becomes a matter of balancing nutrients with protein, carbs and fats – not pigging out on anything and everything because it tastes good or they advertise it on tv.

  6. Deanna November 1, 2012 at 3:06 pm #

    Hello,

    I just found this website and I really feel for you. My child has 12 food allergies right now and I would like to get her tested again to see if there are other foods she is allergic too. We have not yet done any tests to see if she is allergic to any non-food related things but was thinking that it may be time due to a recent rash and hives that seem to appear and last almost a week- and that happened after playing at a park and not eating anything. I found out she had a few allergies last December but after a test at the allergists, we saw she had a lot more going on. I still feel like something else is wrong with her though. She just turned four and I feel bad subjecting her to tests, but I would like to know the full scope. I brought up EoE and the allergist kind of dismissed it. I know her better and since she was an infant she had so many eating issues. Her skin was always patchy and dry, she had eczema and she threw up a lot after eating- on practically a daily basis. She seemed fine only when I breast fed her so that lasted about 2 years. Have you also had your child tested for any allergies to medications or anything in vaccines? I delayed some of her shots only because her skin would break out. I did get her some of her most recent shots and with one she had a 4 inch circle all around appear and it was red and inflamed. It looked horrible, like she had been burned. Every time I bring it up to the DR or her allergist, they seem to want to dismiss my concerns, so then I say no.

    By the way, great job with your son. You do the very best you can and no one really knows what this is like unless they have been through it.

    • Multiple Food Allergy Help November 1, 2012 at 3:41 pm #

      Hi! So sorry for the trials you are facing! I would get an appointment with a GI doctor- they will have to scope to look for/confirm EoE but hearing your story- it makes think that it would be worth doing it- rule it in- or rule it out so you can try to figure out what is going on with her! Depending on where you live- there are a few really good EoE hospitals- Cincinnati Childrens Hospital, Boston Children’s Hospital, Denver, and Childrens Hospital of Pittsburgh [CHOP] I believe are the top ones. If your doctors are not addressing your concerns- there is NOTHING wrong with seeking out a second opinion! Trust your instincts! Regarding the vaccines- is your daughter allergic to egg? It is commonly used in vaccines, and could be causing some of her reactions. Have you seen online “The Eczema Company“? She has a blog and many products to try and help treat eczema. Really wish you good luck! Be sure to check out our FB page too- lots of info goes there, and a great way to interact! Please feel free to touch back or email me and let me know how you are doing with getting the health issues diagnosed! Jenny

      • Deanna November 2, 2012 at 3:19 pm #

        I believe I will get a second opinion. I was not that impressed with the attitude that the allergist gave me. My daughter’s primary doctor is really great and will talk things out with me, but sometimes leans towards just wanting to do all the shots. I trust my better judgement. I have had her tested for eggs, which came back negative- but my daughter was complaining that her mouth hurts when she eats them. She said this to a baby sitter and me when I made her breakfast with eggs. She used to really enjoy them and now she doesn’t touch them. The test was negative at the allergists office, but she refuses to eat them. She has no issue when they are in a cake or in something requiring eggs in the recipe- at least I haven’t noticed any visible pain or outbreak of some sort. Her dad is allergic to eggs though. I will check out that web site and I sure liked you on FB right away!! I will be making some calls today to get it all figured out!

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