WORST.DAY.EVER! AKA food allergies suck LONG

[coffeefreak]

I have to post this somewhere, and I'm too tired emotionally and physically to talk about it out loud, or field phone calls so I'm going to talk about it here, where everyone will :grouphug: me for a couple of days until I get a grip, get over myself, and can talk about it with everyone else IRL. I know it could be worse, but I just feel like the worst mother ever right now, so I need to post somewhere where everyone will understand.

 

3 years ago (2009) we dumped our Pediatrician (too long of a back story), found a good allergist, and started running tests to figure out why my dd was always sick, fatigued, upset stomach, diarrhea etc, etc, and why her baby teeth did not form right and were rotting out of her head. We walked away from that knowing she was allergic to soy, various fruits, latex, cats, and tons of seasonal allergy things. That was in July of 2009. In October of 2009, I started having health problems again, which resulted in two separate surgeries in 2010.

 

Fast forward to April this year. DD breaks out in a rash from head to toe that started on her extremities, lasted for 6 weeks, also had severe headaches, fatigue, and tummy troubles. She was on several different drugs, and IB so I thought that's what the tummy troubles were from. Week 5 I get the stomach flu and her Pediatrician calls me to tell me she's stumped, it's time to see an allergist. I couldn't do anything about it because I couldn't even pick myself up off the couch, let alone start making appointments. Week 6 I'm better, and we are able to keep the itching and rash under control with antihistamines. I call her to talk to her about the spots, and she says she thinks it's a virus but still thinks it's a good idea to re-test for food allergies sometime this summer. We set up an appointment with a dermetologist for June (soonest they would see us:glare:), and by the end of week 6, dd's rash clears up. However, tummy troubles, and fatigue get worse. She's horribly constipated and distended, so I start working to get her un-constipated because of all the medications. She starts moving again so to speak, but her tummy only feels worse, especially after dinner. We have good days and bad days. No one is sleeping because she's up all night with pain. The pain is above the belly button so I KNOW it's not constipation.

 

My youngest is a drama queen, and so, on Monday, I hit an all time low of asking dd why she doesn't want to be well (she wouldn't do the dishes, but she was playing with friends earlier in the day), and accuse her of lying to me about how she's feeling, and immediately have a flashback to 3 years ago. Same conversation, same situation. So, I apologize, give her an ice cream bar, and DH sit in our room for 2 hours to discuss the next course of action. I called her Dr and her allergist, Dr put her on Miralax, and we saw the allergist today.

 

If you made it this far, God bless you!:tongue_smilie:

 

So, today, we meet with her allergist for the first time in 3 years. The allergist is very nice, but firm, where have we been? Why didn't we come in for follow ups? When these symptoms started, we should have suspected wheat. I asked why:confused:, she starts reading her notes out loud to me. She had tested positive for soy AND WHEAT, but we eliminated soy first. After 14 days, dd was doing so well, we decided (with the allergist) to wait and see how she did, and we were supposed to make a follow up appointment for 6 months later to re-test for wheat to make sure it wasn't a false positive. 6 months later, I was bedridden and having surgery in 3 weeks. 6 months after that, she was still doing well, but the tummy troubles were slowly creeping back in. DH and I had completely forgotten about the Wheat issue and chalked every issue up to stress, viruses, Ibuprophen (braces), soy snuck into her diet, WHATEVER. We never remembered the wheat allergy.:crying:

 

She was very nice, but basically told me this is the child that DOES need to see a specialist for every "little" stomach ache, and rash, and she is positive it is a wheat allergy that we've been dealing with all year. DD missed 21 days of school not counting the days we only did math or reading and I counted them as full days and every one of those days was a stomach ache and/or the rash we've been dealing with.

 

Worst. Day. Ever.

I cried the whole way home.

The upside is, the receptionist at the Pediatrician's office that I spoke with to leave a message for DD's Dr stopped typing, looked at me and said, "You realize none of this is your fault? You've done the best you could.":crying: *SIGH* I just wish I felt that way.

 

We drew 6 vials of blood today and she is off all wheat starting now. I am so overwhelmed. But, the upside is, I hadn't been grocery shopping because today was payday so I won't be wasting money on food she can't eat. The downside is, we lose our health insurance at the end of the year because dh's company is getting bought out and he will be laid off by then. Some days, I just wish I had never gotten out of bed.

 

Dorinda

[ktgrok]

Hugs!!!

 

I have a son that wasn't diagnosed with his illness (Asperger's) until he was 11. I know the guilt of looking back and seeing all the signs in restrospect, and feeling so awful that you didn't realize it sooner.

 

You are doing the best you can. And your daughter is going to be fine.

[frugalmama]

:grouphug: from another food allergy mama.

[wapiti]

:grouphug:

 

Fwiw, my ds just spent 4 days in the hospital on oxygen due to a combination of pneumonia and asthma. I hadn't realized that he had been off his flovent and that the flovent inhaler was empty (I had just spent the five days prior with dd, who was hospitalized for the same reason). Now the ped is recommending that we dump our allergist (who we were seeing for the asthma but we were overdue for a checkup) and she is sending us to "better" experts (National Jewish, which is local for us). Mostly, to the extent that his asthma is poorly controlled, it is my fault.

[justLisa]

So many :grouphug::grouphug::grouphug:

 

I know what you are feeling. Just go through the motions. Slap yourself when you want to cry and feel helpless. You WILL get through! I have seen what a wheat allergy can do, and what happens AFTER. If that is it, you should definitely have some major, major progress. Hugs for you are your blesssed little baby.

[Zoo Keeper]

:grouphug::grouphug: to you and your daughter.

 

I have children with allergy issues, too. It is next to impossible to do everything right all the time. PRAISE GOD you have found the problem, so now you all can go forward from here. :grouphug:

[Dana]

:grouphug:

Allergies stink.

But...you know more now and should be able to make changes.

 

:grouphug:

[Little Nyssa]

:grouphug:

[thescrappyhomeschooler]

:grouphug::grouphug::grouphug:

 

The receptionist is right. You really did do the best you could, and it is not your fault. Dealing with your own health issues can easily make a parent lose track of what's going on with everything and everyone else.

 

I have a gluten intolerance. I can tell you that the good news is that it shouldn't take long for your daughter to start feeling loads better once she's off the wheat. You'll all feel better then.

[lexi]

I'm so sorry! :grouphug::grouphug::grouphug:

We are a food allergy family too and it is so very very tough and frustrating! We have wheat and soy allergies too. If you need a shoulder to cry on or need to vent, look me up. My food allergy blog is in my siggie and it has my email.

I hope things get better. It has taken us years to figure out our dd's allergies (and we're still learning) but her health is improving. So, be encouraged that over time and with some hard work we've seen some major improvements and it has been so worth it. But man, what a journey! :crying:

[Susann]

PLEASE, PLEASE, PLEASE talk to your dr. about celiac disease. Your story sounds very, very similiar to what we went through with dd. I finally got mad at the peds who kept saying she was constipated, talked to her about anorexia while I was out of the room because she kept losing weight, and saying that since I homeschooled I was an overprotective mom and it was all in our heads. DD was in severe pain at meals and had several other issues like your dd. I finally got mad took her to a gastroenterologist my dh had been to. He talked to us for five minutes said I think she has celiac disease. Her blood test came back positive that afternoon and we scheduled an upper GI which is the only way to positively diagnose and also to see amount of damage. Her villi were totally destroyed, she was literally starving to death.A few days gluten free and she was pain free. The damage was so extensive it'll take 5-7 years for the villi to regenerate. We're also dealing with the numerous side affects of the malnutrition. Celiac disease is NOT a wheat allergy but an autoimmune disease that can be controlled by diet and can seriously effect your overall health/life expectancy. In October, it'll be three years since she was diagnosed. It's only been the last 6-9 months that I feel we're getting our old dd back after being ill for so long. Please talk to a gastro. who is familiar with this disease-not all are-it's severely underdiagnosed in the US. I'd be happy to answer any ? you might have about celiac disease. I'm sending prayers & hugs your way as you search for answers!!

[sbgrace]

:grouphug: From another food allergy mom who has a similar story to tell. :grouphug:

 

I do think you should ask for a celiac test before you remove wheat. It won't be accurate if she's not getting gluten. I'd also consider GI to talk about the possibiliy of eosinophilic diseases if celiac is negative or if her symptoms don't improve with removal of the problem foods. I might want to talk to them about it anyway given that type of GI reaction to allergens and that you're losing insurance soon. Will your kids qualify for a state program to remain insured?

Edited June 23, 2012 by sbgrace

[Occasionally]

:grouphug::grouphug::grouphug:

 

The receptionist is right. You really did do the best you could, and it is not your fault. Dealing with your own health issues can easily make a parent lose track of what's going on with everything and everyone else.

 

I have a gluten intolerance. I can tell you that the good news is that it shouldn't take long for your daughter to start feeling loads better once she's off the wheat. You'll all feel better then.

 

:iagree:

[Julie Smith]

:grouphug::grouphug::grouphug:

 

The receptionist is right. You really did do the best you could, and it is not your fault. Dealing with your own health issues can easily make a parent lose track of what's going on with everything and everyone else.

 

 

 

:iagree:

[Amber in AUS]

Hugs

[coffeefreak]

Thanks ladies. I knew I could count on you! I'm starting to feel a little better. I went to Whole foods last night and bought a ton of food for her just to keep her fed until I can make changes in my kitchen. She slept through the night for the first time in 6 months. It was the best night of sleep we've all had in forever. Then, I went to Walmart today to pick up a couple of things and became completely overwhelmed when I realized EVERYTHING in my kitchen is contaminated.:001_unsure: I keep a clean kitchen, but I never noticed the crumbs in my silverware drawer, or the flour coating everything in the Spice cabinet. I tried searching to see if I have to get rid of everything, or if I can wash everything and every article I found says throw it out, but it's referring to celiac. UGH.:confused:

 

So, I'm trying to figure out what is still safe (not the silverware drawer obviously:lol:) We are running the tests for celiac (I have several relatives with the disease), however, we couldn't wait to take her off wheat to scope her because of how sick she's been. In a way I'm praying the blood test will come back positive because that will be good enough for me, but I know she should really be scoped.

 

We'll see what happens. If you know what I'm supposed to do about the cutting boards, nylon spatulas, measuring cups etc, I would really appreciate any help/advice you can give me. All they told me was eliminate wheat. Right now that doesn't seem very helpful.:glare:

 

Blessings!

:grouphug:

Dorinda

[pbb119]

:grouphug: From another food allergy mom who has a similar story to tell. :grouphug:

 

I do think you should ask for a celiac test before you remove wheat. It won't be accurate if she's not getting gluten. I'd also consider GI to talk about the possibiliy of eosinophilic diseases if celiac is negative or if her symptoms don't improve with removal of the problem foods. I might want to talk to them about it anyway given that type of GI reaction to allergens and that you're losing insurance soon. Will your kids qualify for a state program to remain insured?

 

:iagree:

:grouphug::grouphug:

 

my son has eosinophilic esophagitis. A lifetime of symptoms and I always thought it was this or that, and even his pediatrician kept blaming me for his eczema and dry skin, at every appt telling me I was using the wrong soaps, not moisterizing enough, etc. etc. Food allergies are so illusive and have such a broad spectrum of symptoms that can be easily explained by so many other things. Do not beat yourself up. You are on the path to finding out all that you need to in order to move on and get your child feeling better.

 

Again, since you are losing insurance, please get her scoped now. The dx of an eosinophilic can take FOREVER. They always want to rule out everything else out first, and the sypmtoms can be anywhere from severe to nearly nonexistent. My son had SO many of her same symptoms, but he is not celiac and he tolerates moderate amounts of wheat.

 

Feel free to p.m. me if you ever want to talk, vent, need more info, etc. With any food allergy, esp. one that is is in everything like wheat, soy, corn, dairy, egg, etc. it can be so overwhelming at first. Know that it will get easier, you will find substitutes, you will learn to cook safe, delicious foods, and your life will feel normal again. more :grouphug: to you.

[justamouse]

:grouphug::grouphug:

[Caraway]

I was misdiagnosed. For decades. By doctors.

 

You are doing fine. Now that you know more, you will do better. :grouphug:

[LittleIzumi]

:grouphug::grouphug::grouphug::grouphug::grouphug:

[Cammie]

:grouphug:

 

My daughter complained of stomach aches for AGES before we finally put two and two together and realized it was lactose intolerance. She was a HUGE milk drinker and it had just never, ever occurred to me that the stomach aches came after she had a glass of milk (she had one with every meal.) Once I figured it out and got her lactaid tablets...the stomach aches disappeared. I felt terrible. I had assumed that most of it was anxiety, gas, attention seeking, nervousness. I totally felt like I had failed my child. I guess we all have those moments.

 

:grouphug:

[DawnL]

I'm so sorry. It really, truly, isn't your fault.

 

I've had plenty of "why the heck didn't I realize this sooner!" moments as a parent. I think they are totally normal.

 

If you need tips on gluten-free stuff, ask away. I know there are plenty of us here who have experience in that regard.

[TravelingChris]

I did take my daughter to doctors and they misdiagnosed her. She was getting bright red on her face and ears. Not all the time but fairly often. She was given all sorts of medicated creams and they did nothing for her. Why? Because she had an allergy that was not detected. Then this year, she figured out she can't eat citrus because it now no longer just made her red but also itchy. Fine, we do that. BUt then here comes the shocker- she isn't allergic just to citrus,but to citric acid. Yes, the citric acid where on the internet they keep saying it is an intolerance. No, for her, it is an allergy- by February she was getting anaphalactic with citric acid. She did that several times and the allergist she already had for wasp allergy, tested her and yes, she is allergic to both citrus and citric acid. (I guess she is probably allergic to the citric acid in citrus). So we have now removed all citric acid, sodium citrate, and potassium citrate products from our home. It isn't just food we have to read labels on=also any time of household cleaner or toiletry items. She had to switch shampoos, soaps, dish washing liquid, lots and lots of stuff. It cost a lot of money. So yes, I do understand.

:grouphug::grouphug::grouphug:

[Jen in PA]

:grouphug:

[Truscifi]

:grouphug::grouphug::grouphug:

 

I agree with the receptionist. You did the best you could in the circumstances. :grouphug:

[Momma_Bear]

:grouphug::grouphug::grouphug:

[HollyDay]

:grouphug: We are going to the allergist this week to start the food allergy hunt as well. I've identified dairy and eggs by elimination and trial and error, but I'm still missing something. It IS so very overwhelming!!! But, it HAS to get better!!!

[macpuffins]

...today to pick up a couple of things and became completely overwhelmed when I realized EVERYTHING in my kitchen is contaminated.:001_unsure: I keep a clean kitchen, but I never noticed the crumbs in my silverware drawer, or the flour coating everything in the Spice cabinet. I tried searching to see if I have to get rid of everything, or if I can wash everything and every article I found says throw it out, but it's referring to celiac. UGH.:confused:

 

I'm in these shoes. I am gluten-intolerant/allergic (NOT Celiac, OUTRIGHT allergy) and hubby is not, nor is he a fan of gf food (except pasta - I've got that down to a science).

We do not have separate cutlery/utensils/pots/pans they just go through the dishwasher (after we manually remove the visible traces). Cutting board - I have my own. We only have the one knife block, so I wash the knife BEFORE I use it. I have my own toaster oven, and everything done in that one is GF. Microwave is shared, and wiped down. Counter is the same.

Have friends coming to visit that have allergies that we can eat, and their requirements are the same. Well-washed, we're getting a separate cutting board for them, and a good serrated knife (since that is the hardest one to clean). We're cleaning my toaster oven (vinegar/water wipe down inside, crumb tray cleaned and dish-washer both). And that was her entire list of things to do to make food preparation area safe. We are already careful about trace contamination of other things in food storage (and when in doubt, we throw it out or hubby eats it).

 

So, I'm trying to figure out what is still safe (not the silverware drawer obviously:lol:) We are running the tests for celiac (I have several relatives with the disease), however, we couldn't wait to take her off wheat to scope her because of how sick she's been. In a way I'm praying the blood test will come back positive because that will be good enough for me, but I know she should really be scoped.

 

Cousin's daughter just went through this, and she was scoped, and they didn't do the biopsy because the gastro could SEE the damage and said it wasn't worth the extra effort/testing since it was conclusive.

 

We'll see what happens. If you know what I'm supposed to do about the cutting boards, nylon spatulas, measuring cups etc, I would really appreciate any help/advice you can give me. All they told me was eliminate wheat. Right now that doesn't seem very helpful.:glare:

 

cutting boards - get a separate tempered glass one for her

spatulas - if porous, she doesn't have them used in prep of her food. Get a good set of silicon ones, we love them

measuring cups - we only use pyrex, not an issue

measuring spoons - again, metal, takes the issue away immediately.

OTHER utensils - get rid of wood or buy ALL new and only use for her (or make a designation that is very obvious), same w/ anything plastic/with grooves/pits/etc

storage containers - esp those that go in the microwave = glass. just like pasta sauce makes them stained, gluten stays in too... it is a *trace* but sometimes that can be enough to set things off... plus, glass is WAY safer...

 

BIG WARNING:

pots/pans - if they're stainless steel = 2x through the d/w on pots/pans setting then dedicate

if they are teflon and there is even a TINY groove/dent/flake = TOSS IT. You can't get it clean enough to be safe for her (don't even ask how I found that one out)

cast iron - clean it, go past that lovely seasoning, and get back to base iron again. re-season it safely, and it only does gf unless you wish to do it again.

 

BBQ - if your family does the buns on the grill too, that baby gets a scrub down as if it were carrying the plague. Usually 2-3 good scrubbings w/ a non-abrasive sponge type affair w/ a toothbrush for nooks/crannies/corners is enough. If it is going to be shared b/w gluten containing and gluten-free, it is going to be dicey b/c heated gluten deposits on everything in the vicinity and contaminates EVERYTHING done in the same vessel. I can't do shared BBQ. Even the briquettes have to be replaced. If it is fuel-burning, the entire insides get a 'going over'.

 

Pauline

supposedly gluten-free since 1990, in reality 2003 w/ a few accidents

also a person w/ anaphylaxis w/ nuts and that's a 'no traces' can exist type of allergy :(

[chickenpatty]

:grouphug::grouphug:

[Splash]

We are going through this right now too. Dd has always had food allergies but wheat is new. They don't think it is celiac but we haven't had the scope. Upper GI study didn't show anything other than reflux and that is while she is on prevacid. I'm debating taking her to National Jewish finally or if she's doing okay with local doctor.

 

She is allergic to corn, rice, wheat, eggs, tree nuts, peanuts, red pepper, paprika, all trees, grasses, weeds, and animals.

 

Finding all the offending foods when she was little finally led to sleeping through the night. Before we discovered the rice and paprika allergies she woke every other hour screaming. She was four years old the first time she slept through the night.

 

I hope your daughter feels better soon. I know my dd has felt better since removing wheat from her diet even though she hates missing out on bread and noodles.

[Mom2absh]

:grouphug::grouphug::grouphug: No condemnation here, just lots of hugs!! :grouphug::grouphug::grouphug:

[Caroline]

My dd7 was diagnosed with celiac when she was 3. She was tested as part of a medical study. We didn't know anything was wrong. However, as soon as I took gluten out of her diet, she magically transformed into a much nicer person. (And who wouldn't be a nicer person without her gut hurting her all of the time?)

 

I felt so bad. I had been essentially poisoning my child all of her life. I felt awful.

 

We do not keep a gluten-free house. I am very careful with her food. Her blood tests show that she is not getting any gluten. She goes to the GI doctor every year and has bloodwork done every six months. PM me if you want me to explain the precautions I take with her food.

 

I still have moments where I feel awful about not knowing my dd had celiac. But, since I cannot change that, I have to keep going. My other children, DH, I, my sisters, nieces, nephews, and parents have all been tested. No one else has it.

 

Good luck. Don't beat yourself up.

[coffeefreak]

I posted an update. Thanks for the support ladies! I'm sure I'll be tapping into your knowledge as the weeks progress!

:grouphug:

Dorinda

 

ETA I really can't tell you how this thread has carried me through this last week. I just kept thinking, "We are not alone. There ARE moms out there that get it." :)