Just got my ELISA results...

[changingseasons]

and I am BLOWN AWAY. Seriously. We're still waiting for DD's results from Sage Labs, but in the meantime I decided to get myself tested just to make sure that I didn't have any hidden allergies that might be aggravating the situation. I did mine through Meridian Valley Laboratory because they are local, and cheap ($150 for the basic food panel, as compared to DD's $2800 test through Sage.) They do combined IgE and IgG, so there's no way to tell which foods are which type of reaction, but I honestly thought it would come back with nothing for me. Except maybe tomatoes, because those cause me stomach distress if concentrated, like in marinara.

So, the test came back with a BUNCH of positive for me!! It's still pending for chicken, soy, buckwheat, rye, and papaya (I'm not sure why... I guess I will get those results later. But what I did get shows that:

I had a moderate reaction to:

• beef
• malt
• sunflower seed
• kidney bean (ha ha... guess what I have cooking in the crockpot RIGHT NOW )
• tomato

I had a serious reaction to:

• cow's milk (all dairy was off the charts- significant is >350-500 depending on the food, and I score in the 1600-1700 range for all)
• casein
• lactalbumin
• goat's milk
• american cheese
• cheddar cheese
• cottage cheese
• mozzarella cheese
• swiss cheese
• egg white
• egg yolk
• gliadin (I don't even know what this is...)
• gluten
• wheat
• almond (this & peanut were off the charts as well- significant is >138 & >206 and I got 1701 and 1527)
• peanut
• lemon

Somewhere in this huge stack of library books, I read that if you have a strong craving for a certain food, that you are probably allergic to it. I honestly thought that was a load of crap. But apparently it wasn't all wrong- cheese has always been my favorite food, and I have eaten a TON of dairy my entire life. This is so sad.

So what does all this mean for DD????? Does this mean that she just inherited my intolerances, or does this mean that my body is just not processing these foods right, so when they get to her they cause a reaction in her as well?

I am just totally shocked and bummed out right now... I can't even imagine what DD's ELISA will show since she has super bad reactions to foods, and I didn't have any really noticeable symptoms and still showed allergic to so many things.

[*~Member~*]

HOLY COW!!! I'm so sorry! I'm sending out good thoughts to you and your DD

[beka1977]

Originally Posted by changingseasons

Somewhere in this huge stack of library books, I read that if you have a strong craving for a certain food, that you are probably allergic to it. I honestly thought that was a load of crap.


I can't even imagine what DD's ELISA will show since she has super bad reactions to foods, and I didn't have any really noticeable symptoms and still showed allergic to so many things.

I was told the same thing regarding cravings and allergies years ago by an allergist. He asked me to list my diet and said that he could predict what I was allergic to.... After listening to me go on about how much I loved cereal he guessed wheat and milk.... sure enough!

I don't think that your daughter's will necessarily be so much worse. It is possible that you are having many more reactions than you think that you are. However because it has been going on so long you just assume that it is part of being you. When I gave up gluten all sorts of things cleared up that I hadn't even really realized were issues.

Hang in there. Think of how amazing you will feel and look when this is all sorted out!

[tayndrewsmama]

It's pretty overwhelming to get results like that. I had one done a couple of years ago and would have gotten a plastic bubble if it didn't say that I am allergic to plastic. :eyeroll

If it makes you feel any better, out of all of the foods that I showed a reaction to then I now only have a reaction to one on the most recent test. Avoidance is a royal pain, but it does seem to work.

Gliadin is a protein in gluten. I have to admit that I am confused about why they detailed some cheeses and not all if they say you are allergic to milk and casein. All cheese would have that. Same with listing gliadin and gluten separately. Interesting.

[changingseasons]

Yeah, I don't really get why they do all the cheese separately...

What makes it harder for me is that I haven't noticed any difference in myself since I stopped dairy for DD, about 3 months ago. Maybe because I've just been so focused on getting her better... I have been eating wheat/gluten though, but rarely. Guess I will have to cut it out altogether.

Also confusing- DD didn't show any signs of food intolerance until after her 2-mo. vaccines (only vaccines she had/will ever have...). Maybe her body was strong enough to process everything even though I wasn't, and then the vaccines jacked up her immune system. I'm just trying to figure out how this all happened... it's so frustrating!!

[changingseasons]

Originally Posted by tayndrewsmama

If it makes you feel any better, out of all of the foods that I showed a reaction to then I now only have a reaction to one on the most recent test. Avoidance is a royal pain, but it does seem to work.

That's great to know. So do you just avoid until your gut is healed, and then you can eat those foods again?? And how long did that take?

[tayndrewsmama]

Originally Posted by changingseasons

That's great to know. So do you just avoid until your gut is healed, and then you can eat those foods again?? And how long did that take?

Well, I am going to guess this isn't the answer you'll want to hear, but I just found out this week that the only food sensitivity left is rice. So, that was almost two years off of it. I cheated a handful of times in that two years. That's not to say I haven't been clear on the others for much longer, I just didn't know until now. I wish I had a better answer. I know that they typical avoidance advice is to go six months without and then retest. Obviously I didn't do that. I haven't been to the grocery store since I got the results so I haven't even had the opportunity to try the other foods.

[nalo]

BIG hugs. I can only imagine how you felt when you first read those results. If it were me, I think I would believe the test and eliminate all of those things for the remainder of nursing DD (yeah, easier said than done I know). However, upon weaning I would choose to trial lots of those things and just see. I don't know a ton about testing but I think it is very possible that you are currently reacting to some/all of these things because of your own leaky gut (?). I know you guys are doing serious gut healing right now like many of us are and when you FINALLY get there (how to tell? who knows ) hopefully many of these foods will be okay for you. Depending on how long you plan to nurse you may choose to trial one or more of these while still nursing. It will also depend on what DD's results are of course. I'm so sorry you have to face even more than you thought.

Have you heard of the Flying Apron Bakery in Fremont? Vegan, GF, organic, etc. Tons of bakery items plus lunch foods too. We actually just went today and got some yummy coconut muffins (vegan, GF, fruit juice sweetened). At least there's one safe place to go eat!

[changingseasons]

Originally Posted by DoulaMary

Have you heard of the Flying Apron Bakery in Fremont? Vegan, GF, organic, etc. Tons of bakery items plus lunch foods too. We actually just went today and got some yummy coconut muffins (vegan, GF, fruit juice sweetened). At least there's one safe place to go eat!

I haven't, but I will certainly check it out!! I thought about eating at vegan places, but most use a lot of soy which is definitely out for us. And the worry of x-con made me give up eating out completely.

Another question for all you smart mamas out there- it looks like the basic food panel only tested for kidney beans, lentils, lima beans, and peas. I only reacted to the kidney beans on my test, but DD has reacted to split peas and green peas. Do you think that I should just cut out the entire legume family?? I actually just put black beans on my grocery list because of the yummy recipes someone posted in the meal ideas thread, but now I'm not so sure... Plus, that means that really my only protein source is meat, right (no nuts, no beans)? And quinoa I guess (not my favorite), if that turns out to be ok (I don't think either lab tests for that and I haven't tried it in a while.) Ugh. Our grocery budget just keeps going up and up!!

[mommydancer]

This is a rough time, I'm guessing. That is a pretty solid list. We lost legumes about four mos. ago...that sucked. Sunbutter is out too I think, given your rxn. I was instructed to cut out all the legumes, even peanut butter for me, because they thought that did the best to minimize possible future true allergies to it for DS.

I want to tell you...you can do this. I haven't posted for a while, because I had a bad situation here and needed to focus and work to fix it. We'd already been avoiding milk, soy, goat's milk, tree nuts, legumes, coconut, and eggs, (and DS wasn't eating wheat, but I was). Our protein intake was solely out of meat, and the dietician freaked me out with a reccommended 1-2 oz. three times a day for my toddler. He was having worse and worse bm's again, and I couldn't get it to stop. I was starting to lose it. In a last ditch effort to get him to stop reacting, I stopped eating beef, pork, and wheat myself. (This meant we are eating chicken or turkey with rice pretty much three meals a day.) Well, it only took two days and he went brown, formed, normal for the first time in I don't even know how long. I am hoping that in sharing this you see that there are lots of us doing ridiculous things that other people think are impossible or crazy...but when it works you feel sooooo good! You're studying and learning and depriving yourself, and it's really REALLY hard. I think I have learned that I periodically need to take a hiatus from the 1 am stints reading posts on the computer trying to figure this all out, or I will go nutty. (Geez, they's really got an emoticon for everything, don't they?)

I love that you were proactive and got yourself tested, I have been trying to get someone among our (apathetic, self important.... thank goodness for emoticons...they'd ban me from MDC) western "helping" professionals to talk with me about what the test is and what their ideas are about it. The RAST was kind of a big bust for us and it only led me to folks who disputed my efforts and made me feel discounted. I just haven't wanted to shell out money for more of that.

Okay, I am running looong, but the core message is s'posed to be:
(1) I am really sorry and right there with you with the deprivation...it is sooo hard at times it's unbelievable.
(2) and I really think it is going to have been worth it in the long run, and you can do this.:

[changingseasons]

Thanks mommydancer for the support. I was wondering where you had gone. Hope everything is getting better for you! And I agree- the emoticons here are priceless.

It is just so frustrating. We have been SO CLOSE to baseline, so many times!!! And then I go and eat something bad, and mess it all up. And now to find out that DD isn't the only one with the allergies... it was just too much to absorb.

But at least I'm getting somewhere I guess.. and getting some answers. I don't know what I would have done without all the mamas on MDC, because all the medical 'professionals' that we've seen have been NO help. At least I'm starting to figure this all out, and getting us on the road to healing. It's just such a long road....

[chlobo]

Sorry about the big list but hopegully you can get to baseline soon!

[mommydancer]

We're doing better than we had been. He had another rxn to something in one meal yesterday...I suspect either onions or mushrooms in a soup I made (bone broth sort of thing). I will pin every fricking thing down I don't care how long it takes...(at least I have that level of resolve this morning, can't make any guarantees for this afternoon or this morning). It IS a LONG road. I also think the changes in foods has messed dreadfully w/ my hormones and therefore my mental and emotional balance, which makes it even less fun. Thus, I am perfectly poised to respond with calm professionalism when the pediatric dietician poo poo's the nutritional value of nursing. (Oh, yes, you do detect sarcasm...that's one thing I won't be removing from my diet...ever.):

[karin95]

Are you having any symptoms, currently? If not, i would question the validity of the test. Have you seen the article from Bastyr (the naturopathic college)?
It's very hard to discern if these ELISA tests are helpful at all. Many labs don't use pure samples, and often have a hard time reproducing results.

All tests (RAST, SPT, etc.) have a chance of a false positive, and I think the ELISA has a pretty high chance of that. This is why I am not interested in it at all.

If I were you, I'd look at my own health and see if I feel I'm having negative symptoms that may be food-related. If so, then maybe I'd take my ELISA results and stay away from those foods for a month or so and see how I feel. And then add each food back in and see if I see any differences.

But, really, it's kind of ridiculous that they test for cow's milk, and THEN also for various cheeses. Cheese is made of cow's milk, so it would be crazy to be allergic to it, but then eat cheese. It's just a red flag to me that the test is wacky. i wonder if anyone ever tests negative to the cheeses, but positive to the milk?

I would be wary of your daughter's upcoming results. Don't take them as gospel. it can be more harmful to limit her diet unnecessarily. If you do think the results are accurate, then do an elimination diet of all those foods she comes up pos on, and then add them back one at a time. Any allergist will tell you that the ultimate test is an "oral challenge", so if she can eat something without any adverse effects, then she's not allergic to it.

Good luck!!

[changingseasons]

Originally Posted by mommydancer

We're doing better than we had been. He had another rxn to something in one meal yesterday...I suspect either onions or mushrooms in a soup I made (bone broth sort of thing). I will pin every fricking thing down I don't care how long it takes...(at least I have that level of resolve this morning, can't make any guarantees for this afternoon or this morning). It IS a LONG road. I also think the changes in foods has messed dreadfully w/ my hormones and therefore my mental and emotional balance, which makes it even less fun. Thus, I am perfectly poised to respond with calm professionalism when the pediatric dietician poo poo's the nutritional value of nursing. (Oh, yes, you do detect sarcasm...that's one thing I won't be removing from my diet...ever.):

mommydancer- I am having the same problems with my emotionally state through this whole thing. I have noticed since DD was born (even before all this allergy stuff started) that food has never been so important than while BFing. And now, with the on & off ED's, when I get to a certain point of hunger I just fall apart- I can't deal with anything, can't make a decision, just lose hope and want to sit down and cry. Poor DP has to whip up a dinner super fast before I have a breakdown sometimes.

Originally Posted by karin95

Are you having any symptoms, currently? If not, i would question the validity of the test. Have you seen the article from Bastyr (the naturopathic college)?

I have read that article. And I'm not having any symptoms currently, but I cut dairy out a few months ago, and have really kept gluten to a minimum. I'm not taking the results as proof positive, but they do make sense to me. Most of the foods that I was off the charts for, DD has had serious reactions to- dairy, egg, almonds. Also, in Digestive Wellness they talk about people that crave specific foods are most likely allergic, and the body is craving them to avoid withdrawal. I have ALWAYS been a huge dairy fan- drank milk by the quart when I was a kid, ate ounces and ounces of cheese every day my whole life. Love yogurt, cottage cheese, cream cheese, ice cream... you name it (dairy) and I would eat it regularly.

I did have some digestive issues before I was pregnant, kind of IBS type symptoms, but interestingly they all went away while I was pregnant. Now that I'm trying all new & different foods on the EDs, I have gotten a stomach upset a few times, and actually now have some eczema. Oops- so I guess I do have symptoms.

[changingseasons]

Just got DD's results (WAY faster than I was expecting!) and posted them on my other thread.

[kjbrown92]

I feel for you. We cut out all legumes awhile ago. And I know how you feel about the monotony of meals when you feel like you're limited to few foods. I've started using different foods. My DD only had a few vegetables that she didn't react to, so I looked at those food families to see if I could widen my choices. So now I'm using leeks and fennel. We can't do white potatoes so now we do a lot of rice, and sweet potatoes are good in stew (who knew?). And sweet potato chips straight out of the fryer are AWESOME. I tried making coconut milk ice cream and guess what -- that was really good too. We are becoming more creative, certainly, with our food.

It takes longer to shop, and it's more expensive, that's for sure. I'm still trying to figure out how to make that better, with the expensive ingedients I need to buy for the family. But when there's no night waking, screaming about leg pains, eczema, etc. it's all worth it.

I did an ED to figure out if I had any issues (since two of my kids did) and I realized that my IBS symptoms were from a lot of the foods that my kids can't do (white potatoes, tomatoes, dairy, soy). I thought I just had weird digestive issues. But if I cheat, boy do I know it. I'm hoping after gut healing that I can add some things back in (to everyone's diets).

We're all with you. And I love how everyone supports everyone else in their healing process.

[DreamsInDigital]

Originally Posted by changingseasons

Also confusing- DD didn't show any signs of food intolerance until after her 2-mo. vaccines (only vaccines she had/will ever have...).

My food allergic DS didn't start showing signs of allergies until he was 2 months old and he was not vaxed. It could be unrelated.

[changingseasons]

I suppose it is possible that it's not related. But DD had her first screaming episode and nasty, green poo the night of the vaccines, and they just got worse from there.

[DreamsInDigital]

Originally Posted by changingseasons

I suppose it is possible that it's not related. But DD had her first screaming episode and nasty, green poo the night of the vaccines, and they just got worse from there.

Okay well then that might be a correlation. I just wanted to offer you our story in case. But yours seems a little more obvious.