Could allergy to milk impact CIDP?
AnonymousJuly 5, 2007 at 3:45 pm
Today we got word that Dell’s 2nd bloodtest for milk shows he is extreamly allergic to milk. We’re waiting for the wheat test.
He shows no outward sign, no rashes, no stomach aches that we know of. Since he’s only 3, it’s hard to know about the stomach. He loves milk and asks for it often.
Does anyone know if this could be impacting his CIDP? If you have read about Dell, you know that everything is “strange” with Dell. We THINK we are finally getting a hold on the CIDP with solumedrol each week and ivig every 5th week.
I wonder if the milk could impact inflammation, etc. I went to Walmart and bought milk free items today. It will be hard to switch since I love to cook and like Paula Deen, I use butter, sour cream and milk and cheese in everything.
Thanks for any information.
AnonymousJuly 5, 2007 at 4:25 pm
Hi Dell’s Mom.
Sorry to hear that Dell is allergic. I hope the wheat test turns out negative for allergies and that his CIDP resolves itself completely. I don’t know if milk contributes to inflammation in the body, but I do know how my body reacted to it and some other foods while sick with GBS.
Before GBS, I didn’t have food allergies of any kind, so this really stood out for me (among all the other weird symptoms). I did however, show outward signs of the allergy–bloating and cramping about 15 minutes after drinking milk or eating yogurt. Once I made the connection with my symptoms to the food, I just eliminated the milk products. Doing this brought improvement (one less nuisance) so I kept off milk products for 4 months. Since I’ve started to heal from the GBS attack, I notice my food sensitivities/allergies have diminished. I hope Dell’s allergy fades away too.
There are other foods which I feel negatively impact my body/immune system BECAUSE of the GBS. Sugar, caffeine and alcohol (I know at 3 years of age, this one’s a non-issue). My body is still sensitive to these things, but I don’t know if they cause more inflammation. They tend to make me more fatigued and cause my residuals to flare.
July 5, 2007 at 6:51 pm
Glad to hear Dell is doing better! As you mentioned, Dell presents differently than most as does Kevin. We believe Kevin’s trigger was his body fighting off the allergic reaction to three bee stings he received simultaneously. I wonder if the fact that he is allergic to the milk and maybe wheat, if every time he has these products it causes his body to fight off the reaction and never stop fighting since he receives the products regularly? It’s as if his trigger never stops. Here is another uneducated guess, steroids are used for allergic reactions, Dell has been receiving them as of late, and he has been improving. The ivig did not seem to be helping on its own before, maybe the steroids allow the fighting to stop by controlling the allergic reaction to the milk/possible wheat and the ivig is adding to the halt. There really are no studies that say for certain how the ivig works, does it aid in stopping inflamation, confuse the immune system, act as a barrier, allow the immune system to attack it instead of the myelin, or all of the above. Both together seem to be the answer.
Anyway, it sounds as if allergies might be his trigger and now the steroids have helped to control it. Maybe with the help of God, it could be as simple as removing the products and regular ivig and steroids and then you could start to watch your baby improve. That would truly be a miracle. How wonderful for you to have stumbled upon this possible cause! I am going to pray that this is the answer to Dells problems. Best of luck to you and your family.
Dawn Kevies mom 😮
ps, I cook with tons of “good stuff” too, butter, milk heavy whipping cream, etc. not many people cook that way anymore. It’s good to know there are still some old fashioned moms out there! 😮
AnonymousJuly 5, 2007 at 9:40 pm
Honestly, who knows what the milk reaction could do. Remember how we were talking about the wheat allergy causing neuropathy…maybe the milk can do the same thing.
Emily gets HORRIBLE stomach aches off & on when she drinks milk. It’s really weird. She couldn’t drink regular milk for about 6 months without the stomach pains, she was on organic whole milk. Well, we tried regular (non-organic) milk & she was fine for a few months then out of no where they started again. She’s been off of milk for about 2 weeks. I gave her a cup of organic milk this morning & she hasn’t had any pains. She can still eat cheese, yogurt, ice cream, etc though. I’m SURE that the CIDP has SOMETHING to do with it. Can I prove it? NOPE!
I’m glad that you are getting more answers. Hopefully soon you will be able to put all the pieces of the puzzle together. I was thinking about Dell earlier today & was wondering how he was doing. I’m glad that he’s still ok. Emi had another checkup today with the neuro. He’s still optimistic! He wanted to lower her IVIG again to once every 10 days but I asked him to wait another month. I just want to do this slowly and not rush it.
Let me know about those wheat allergies.
AnonymousJuly 5, 2007 at 10:33 pm
Thanks to all my friends who posted. We had one wheat test come back negative, hope this one does too.
Dell was breastfed until 26 months. At about 12 months, I started giving him a little cows milk. He came down with CIDP at 5-8 months, about the time he started eating babyfood. I don’t think the cows milk caused the cidp but it can’t be helping.
We only give our kids organic milk. Kirk and I were drinking it too but it got so expensive and we figure we’re too far gone since we’ve been drinking regular milk for all these years so we started back to the “full hormone variety”.
Love you all of ya’ll and thanks for your kind words.
AnonymousJuly 5, 2007 at 11:13 pm
Don’t you think that by sharing our stories and reactions that we are getting closer to understanding what causes GBS and CIDP? It seems that the answer is a shock to the body – quitting smoking, stress, flu, vaccinations, food poisoning, food allergies…..they all tend to overload the body. That is the only thing that we all have in common. I think those of us unlucky enough to have experienced these syndromes overloaded our systems and then one thing set it off.
Aren’t we the only species that drinks another species’ milk? Milk is used by other animals until their babies get bigger. It is not given into adulthood like humans do. I thought we lose the enzyme to truly digest milk around age two.
AnonymousJuly 6, 2007 at 9:54 am
My brother also raises goats. We could milk them but don’t know if I want to go through all of that. I’m being lazy. We used to get “real” cows milk from a guy down the road and I would bring it to a certain temp. then refrig. it. I traded baked goods for milk.
I looked yesterday in Walmart. Goats milk is $3.00 for a quart. I bought him rice milk and he’s drinking it with no problem. I guess I could let him drink the rice milk in the cup and when I need to cook with milk, buy the goats milk.
AnonymousJuly 7, 2007 at 1:30 am
Yeah, it is a hassle to milk the goat, then heat… (pasteurize it in the microwave), then cool it down immediately,….. but that is part of the game. The good thing about goat’s milk is that you do not have to “homogenize” it.
The biggest thing, (and I believe this has been pretty much proved), is that goat milk is much less allergenic (if at all), than traditional cow’s milk.
****(Kelly,..There must be all kinds of “milk” available! 🙂 How do they obtain almond’s milk, anyway.??:confused:) I guess just like soy milk and everything else, huh?? What a world we live in.
Good luck, Lori.
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