Jae's Update: Food Allergies and POTS

[CarolinAlaska]

After my youngest daughter was diagnosed with a corn allergy, we finally started making strides towards health improvements for her. This got me wondering about Jae and what might have been missed. I asked her allergy/asthma doctor about whether she had been tested for corn too. She hadn't. We set her up in June for further flood allergy testing, but had to wait until October for the appointment. We had the appointment this last week, and discovered some shocking results. Unlike her sister, she is not allergic to corn. No, she is allergic to one of the mainstays of her diet: potatoes! Not only that, she is also allergic to broccoli, chocolate and almonds. We've begun the process of eliminating these from her diet, which isn't easy when you are already gluten intolerant an many of the GF foods you enjoy have potato or almond flour as a substitute. From what I read, potato flour can also be found in cheese, modified corn starch, MSG, maltodextrin, yeast and other nonpotato type of words. So far, we have already seen improvement in her belly cramping, and I'm sure her diet isn't completely clean yet. Interestingly, the night last week that she had the most pain was after she drank an Ensure before bed. Of course dark chocolate is the only kind she likes... Can you say homemade, potato free, corn free, gluten free, almond and chocolate free Thanksgiving? Hoo boy!

I don't think I've mentioned it, but in October Jae was also diagnosed with postural tachycardia. She was falling down and passing out sometimes. It has improved with increased fluid intake and intentional daily exercise. POTS (postural orthostatic tachycardia syndrome) is common in hypermobility syndrome. I think I will look further into MCAS in light of Jae's recently discovered food allergies. I think MCAS tends to pop up in these patients too. Just wanting to cover all the bases.

This past month or so, Jae has been having lots of abdominal cramping, anal sores, intermittent diarrhea, 5 lb weight loss and more joint pains along with the rest of her health problems. Her blood work, as usual, showed no elevations in crp or sed rate. CBC and CMP was also normal. She'll see GI next week. Her rheumatologist is having her increase her 6MP to see if it will help. Usually GI isn't very helpful, but we'll see what she has to say.

 

[my little penguin]

Did she just test positive or did they do an in office food challenge ?
Random testing for IgE food allergies is not recommended
Testing of both skin or blood has a 50% false positive
If she can successfully eat a serving of the food without having an allergic reaction then your not allergic
Kids with environmental allergies or ezcema tend to have a lot of false positives
Ds tests positive to wheat oats corn barely rye peanuts treenuts sesame and soy
He is only allergic to treenuts
He will be challenging in the hospital positive results of sesame and trout.
More later

Please checkout parebts of kids with food allergies

 

[my little penguin]

http://www.kidswithfoodallergies.org/page/newly-diagnosed.aspx

http://www.kidswithfoodallergies.org/page/food-allergy-topics.aspx

 

[Farmwife]

Hugs
Were wondering about POTS for Grace as well.
I was wondering the same questions as mlp.
We've been thru the food allergy as well.
It was a nightmare!

 

[CarolinAlaska]

Skin testing only. She does not have eczema and her only environmental allergy has to do with grasses. I will try eliminating these from her diet and if it makes a huge difference for her, then we will praise God. If not, then we keep on looking. I don't care who wants to call it a true or real allergy or not, I just want her to have as normal a life as possible. She isn't the typical patient and she doesn't test in the same way as typical patients, but if we find what underlines her health problems one way or another, we're gonna try it and hope for the best.

 

[my little penguin]

Not saying not to eliminate the food
We eliminate a lot of things ds does not tolerate
But being truly allergic is a whole other level of vigilance since traces of the food can kill require epi pen etc...
So it's something that the doctors and you and her need to know and understand the why and what level you are eliminating.
Ds does not tolerate wheat or beef or milk or chicken
Is he allergic in that it will kill him nope
So we don't worry about same lines or same faculty or high risk processing food
Tree nuts traces will cause anaphylaxis which can kill him so whole other level
No bakery items
No commercial ice cream
Wiping down tables
Going out to eat can be deadly if they use the same utensils counters or dryer or skillet
We have had to give him the epi once so trying to never repeat that scenario again

Again no judgement
Both sets of foods cause him issues
One set I am more hyper about and given her age she needs to know as well

Did they give you an epi pen and food allergy action plan ?
When to give the epi instructions and how to avoid the foods until they can prove it one way or the other ?

 

[my little penguin]

She tested positive to cocoa nut or the milk in chocolate?
Chocolate itself isn't an allergen since it has more than one ingredient .
I do know more than a few kids allergic to cocoa potato etc...
Have they ever looked at eosinophilia disorders for her ??

That would fit with the positive tests better and gi distress vs hives and throats closing

 

[CarolinAlaska]

She tested positive to cocoa nut or the milk in chocolate?
Chocolate itself isn't an allergen since it has more than one ingredient .
I do know more than a few kids allergic to cocoa potato etc...
Have they ever looked at eosinophilia disorders for her ??

That would fit with the positive tests better and gi distress vs hives and throats closing

I believe it is cocoa that she reacted to. No, never mentioned eosinophilia disorders. I was just reading about food protein-induced enterocolic syndrome. That seems to fit her symptoms except she doesn't vomit or have gerd, but she used to. Is that similar?

She doesn't rash or get anaphylaxis. The allergist said he didn't think she'd need an epi pen.

 

[my little penguin]

Did the allergist tell you to avoid all tree nuts since she tests posit Be to almonds ?
Most recommend avoiding all as well as cross contamination since nuts look the same when crushed
Realize may contains or made in the same faculty as is voluntary statement
Some companies use it well (kraft /general mills etc).
Others only label for some allergens but not others
The third group never labels for any cross contamination so you need to call before eating

Second thing only the top eight allergens are required to appear on the label somewhere in plain English if the manufacturer intended for the allergen to be there
Not if they were run on the same lines
Non top eight allergens such as potato are not required to be on the label so you have to call every time

Enjoy life foods is free of the top eight allergens (not sure on potato ) but they label well
Katz foods is free of a lot including nuts and wheat but they do make things woth cocoa so...
Kinnicknick also has a lot of products
Ener-g is another one

http://www.foodallergy.org/file/emergency-care-plan.pdf

Fare is another group
You need to sign up to get alerts when FDA recalls things for unlabeled allergens
Medic alert bracelet is a must oncase they try to feed her when she is injuried or you are injured


Kfa has a recipe database (over 1000revipes)
So you can make thanksgiving you just click the box of things you need the recipe free of


Focusing on what she can have also helps
You still have lost gf grains
Meats fruits and veggies plus rice
Let me know if you have questions
Pm me
Join kfa etc..
We have been dealing with this since ds was 4

I naively thought this will be easy at first
I only need to make sure I don't feed him an almond .

 

[my little penguin]

Past reactions are not indicative of feature reactions
So even if she is allergic minorly then she needs an epipen
I would ask the doc for one
Also ask for either in office food challenges or home challenges with an epi pen
If the doc isn't prescribing one then typically they have little food allergy experience or they don't think she is allergic
But you need to know which

 

[my little penguin]

Fpies kids go into shock and need large amounts of iv fluids to try to stop it
Not just have gi symptoms
Ds has gi symptoms
These are an intolerance which does not show up on IgE testing
IgE is for hives throat tightening wheezing
Profuse vomiting etc...

 

[my little penguin]

Given the weird allergens can you get a second opinion ?
Then you can know one if you need to just try to eliminate
Two if you are dealing with true allergens which all require an epi pen since you don't know when they will decide to get ugly
Especially since your allergist didn't give her an epi pen for a nut allergy
Wow

 

[kimmidwife]

I second MLP you should have an epi pen. I also carry Benadryl at all times. I have. Even having weird food reactions myself but all the testing is negative.

 

[sabrina123]

Hi we have kids w/POTS and one with Crohns. 2 of our kids developed very strange allergies with a POTS stage. The allergies lasted a about 5-6 months then went away. strangest thing. They were visible often and some were severe (steroids, then epipen on hand). Our doctors attributed it to POTS. Not saying this is what is happening here, but maybe something to keep in mind that dysautonomia can do weird things. Also, may want to research Histamines / POTS as I remember a connection.

 

[CarolinAlaska]

Hi we have kids w/POTS and one with Crohns. 2 of our kids developed very strange allergies with a POTS stage. The allergies lasted a about 5-6 months then went away. strangest thing. They were visible often and some were severe (steroids, then epipen on hand). Our doctors attributed it to POTS. Not saying this is what is happening here, but maybe something to keep in mind that dysautonomia can do weird things. Also, may want to research Histamines / POTS as I remember a connection.

There are stages of POTS?

 

[Clash]

I don't think she is talking so much about official stages and maybe not even progressive stages. Just that sometimes POTs has phases or flares and with those can come other issues (sometimes without) like gut issues, allergy stuff etc.

At least, I read that some people just flare that way.

Also mast cell disorders, gastroparesis, EDS, Chiari malformation and other underlying issues can be connected to POTs(some as a potential cause others just as Co dx)

My primary issue is IST but have have times where I have more POTs like symptoms especially around my time of the month. It was more pronounced before medication and getting the IST under control.

Hope Jae feel better soon.

 

[sabrina123]

Hi - Sorry should have clarified. There is no real terminology I'm aware of it. Flare is probably a better a word.

At the beginning when my kids had POTS and we didn't know what it really was it could last for many months. Or even when we suspected it for the younger kids, it would take a few months to get things evened out and find out what worked for them.

Now that it's more under control, the flares we get are usually more a week -in rare occasions, a month. If you have multiple issues/diseases going on, it can be worse.

We really find the exercise is critical. POTS Guidelines often say 30 minutes active (like walking) plus 30 minutes/cardio strength. But for some kids, it they may need to build up to even more. Tough when you have a crohn's flare on top of that.