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General Mast Cell Disorders Discussion >> Nutrition >> Therapeutic Dietician vs. Dietician
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Message started by Ladybug on 02/08/14 at 08:03:12

Title: Therapeutic Dietician vs. Dietician
Post by Ladybug on 02/08/14 at 08:03:12

Hi all,

I've been reading so much about how we react to various foods and I feel overwhelmed with it all and all the lists.

My insurance company will not cover me to see a dietician, but that they would cover for a "Therapeutic Dietician."  ::)

I asked my allergist (who is treating me for MCAS) if he would refer me to see a Therapeutic Dietician. He said that he could not unless it would be tied into a disease or illness.  :-[ Huh? Really? Then he asked if I had my skin biopsies done yet (getting them this month). I got the impression that he might be waiting for those, but MCAS still needs to have some food guidelines. :o

Okay . . . here's my question: "Has anyone here had your MC doctor talk to you about foods or even referred you to see a dietician or therapeutic dietician?"

Thanks!  

Title: Re: Therapeutic Dietician vs. Dietician
Post by kesasur on 02/08/14 at 11:41:20

The short answer:  NO

The story:

On my 1st visit the my allergist he said: you are just getting stable after 8 months so just keep eating what you are eating and we'll deal w/ your diet as you get more stable.

4 months later I asked about a nutritionist and he didn't have one to recommend to me. I found my own and NO insurance doesn't cover her unless I have diabetes.

What I like about this woman:
1. she researched MCAS as much as she could BEFORE I arrived
2. she had a list of "no no" foods for us to go through, realizing that I probably had already been through this list but still, I was impressed
3. She didn't freak out over my diet (which is really limited still) but just told me her two areas of concern: vitamin D and calcium.
4. she noticed I paid cash and offered me 30 minute apts rather then the full hour and said she'd look into how much calcium I get in my bone broth and broccoli and we'd work on the rest as spring comes because winter is a big trigger for me (I'm pretty sure).

I think, if you can get to ANYONE who has a good grasp on nutrition, even you can say: "okay, what do I need to add" and then experiment w/ the foods. That really was my only goal- but this woman exceeded my expectations- so that was a bonus! ;D

Kelley

PS- I only use Duck fat right now for cooking. even olive oil seems to be a problem. I might be a be able to tolerate small amounts of lard and tallow. I know chicken fat is okay too.

Title: Re: Therapeutic Dietician vs. Dietician
Post by Spartako on 02/08/14 at 18:14:22

I use a list in german: The big L shows food most likely to trigger mast cells.
http://translate.google.at/translate?sl=de&tl=en&js=n&prev=_t&hl=de&ie=UTF-8&u=http%3A%2F%2Fwww.histaminintoleranz.ch%2Fdownload%2FSIGHI-Lebensmittelliste_HIT.pdf

My main problem foods are:
Tomatoes, egg white, nuts, legumes, alcohol, cocoa, citrus fruits, yeast extracts, glutamate, mustard, coffee.

There are a lot more fruits and vegetables which have too much salicylates for me but that is on an other list.

Most tolerable food for me is rice, potato, iceberg lettuce, turkey meat, salt, thistle oil and spelt bread.

Title: Re: Therapeutic Dietician vs. Dietician
Post by Ladybug on 02/09/14 at 05:05:26

Hi Kelly,

Thank you for responding. Did your doctor's "no-no" list look at all familiar to you? I know that there are several on the internet. Some of them have conflicting information, too.

Did you start with an elimination diet and build up? Did you test for any salicytic sensitivities, too?

Thanks!

Title: Re: Therapeutic Dietician vs. Dietician
Post by Ladybug on 02/09/14 at 05:20:51


Spartako wrote on 02/08/14 at 18:14:22:
I use a list in german: The big L shows food most likely to trigger mast cells.
http://translate.google.at/translate?sl=de&tl=en&js=n&prev=_t&hl=de&ie=UTF-8&u=http%3A%2F%2Fwww.histaminintoleranz.ch%2Fdownload%2FSIGHI-Lebensmittelliste_HIT.pdf

My main problem foods are:
Tomatoes, egg white, nuts, legumes, alcohol, cocoa, citrus fruits, yeast extracts, glutamate, mustard, coffee.

There are a lot more fruits and vegetables which have too much salicylates for me but that is on an other list.

Most tolerable food for me is rice, potato, iceberg lettuce, turkey meat, salt, thistle oil and spelt bread.


Hi Spartaco,

That's interesting that you can eat potato as I thought was consider a nightshade? I'm glad that you found that one food list. I recently came across the PDF, which you may have. It is easier to read: http://www.histaminintoleranz.ch/download/SIGHI-FoodCompatibilityList_HIT(EN).pdf Have you seen this in the PDF format?

I'm confused between the salicytics and histamines. Are people usually one or the other? I'm hoping that I once I go back to my allergist with some GI and dermatology test results (and food lists) that he will understand where I'm coming from and help me with this.

Also, how do we know we're deficient in anything if our doctors don't test for vitamin/mineral deficiencies other than iron or D? I read somewhere that we could also be low in copper...that was a new one for me. What kind of doctor would test for all the mast related vitamin/mineral deficiencies?

Mast cell disease is so unheard of by many doctors that we patients spend so much time doing research, trying to get answers, and putting pieces together. It's exhausting.  :o

Title: Re: Therapeutic Dietician vs. Dietician
Post by brigitte on 02/09/14 at 05:57:42

So the link Spartako posted is for high histamine foods that are likely to trigger mast cells? I went through it, and personally would say that I have more issues with salicylates than I do high histamine foods, though some foods definitely cross both lines.
Ladybug, I'm not sure if most people (mast cell people that is!) tend to be more sensitive to one over the other. It 'seems' to me that a lot of people have benefited from a low histamine diet. But for me, it seems to be more salicylate. Maybe that's because my primary condition is autoimmune urticaria, I don't know. I know on the urticaria society website they encourage trying a low sal diet, but if I remember correctly, they don't mention low histamine, but I could be wrong :o

I know a low sal diet is strongly recommended for fibromyalgia patients.

Title: Re: Therapeutic Dietician vs. Dietician
Post by Ladybug on 02/09/14 at 14:59:53

Hi Bridgette,

Now you have me thinking about salycitics. Originally, I started with Chronic Urticaria and Angioedema for 2 years. I still have this, but manage it with H1/H2 and Ketotifen. However, I want to do more by eliminating foods that can aggravate the urticaria/angioedema AND the MCAS. I'll have to take a look at the sals list as it's been awhile. I'm not sure how to approach figuring all this out and my doctor doesn't seem to be into this foods concern.  :-[ Thanks for sharing!

Title: Re: Therapeutic Dietician vs. Dietician
Post by brigitte on 02/09/14 at 18:26:26

My doctor (and I really don't have "a" doctor guiding me through this anyway) isn't on board with the food sensitivities either. He is not up on current research nor pseudo allergies. He only believes in IgE allergies of which I have none. Grrrrr......
And, like you, I deal with angioedema. I used to get hives, but, knock on wood, I haven't had them in years.
I would definitely look into avoiding salicylates. I am 100% certain that they are major triggers for me, and they hide in EVERYTHING!
If you're going to try avoiding sals, make sure you watch out for topical moisturizers, makeup, deodorant etc., as well as cleaning products, supplements and medications, and of course food. I have by no means figured it all out yet, but I have done quite a bit of searching, so if you want any tips, hopefully I can help. You can always send me a personal message!
Good luck! ;)
By the way, I have finally come to terms with the fact that I cannot tolerate any vegetable, fruit, plant oils at all. It's a bummer. But staying away from them helps a lot.
And.....I am with you on the weight gain. I have gained loads since I became really symptomatic 4 years ago. Between the depression/anxiety drugs and the antihistamines I think my metabolism has completely shut down :-/ too bad I couldn't tolerate cromolyn, for whatever reason that stuff completely takes my appetite away. Not sure if this is typical, but the two months I was on it I lost 15 pounds. I have since gained it all back >:(

Title: Re: Therapeutic Dietician vs. Dietician
Post by KatFromMD on 02/10/14 at 06:23:06

Ladybug,
You can be both histamine and salicylate sensitive, though some people seem to notice a stronger problem with one than the other.  I started out having my most notable reactions to high histamine foods, particularly those containing tomato and fermented products such as vinegar and soy sauce.  I didn't realize at the time that I had MCAS, but I sure noticed those foods were a problem.  Since then I've become more sensitive to more foods and have noticed that some of those are particularly high in salicylates, so I've tried to eliminate them from my diet as well, to see if I can get my GI issues to calm down.

Of course, as you'll hear often around here, each person is different, and you really have to experiment to see exactly which foods you can eat safely.   For example: I've had bad reactions to asparagus, and according to both lists, they should be fine.

Title: Re: Therapeutic Dietician vs. Dietician
Post by Spartako on 02/11/14 at 01:13:35

I did not know about the english pdf but I can read german.
The list is for high histamine food but has a column with an L for possible trigger foods.
The translated pdf is better than google translator:
http://www.histaminintoleranz.ch/download/SIGHI-FoodCompatibilityList_HIT(EN).pdf

MCAS, Histamine Intolerance and Salicylate Sensitivity are different diseases but you can have all.
Salicylates are also a trigger for my mast cells but it is possible that there is another form of a pure Salicylate Sensitivity without MCAS:
http://en.wikipedia.org/wiki/Samter%27s_triad#Cause

MCAS can be caused by different mutations in mast cells which results in different chemicals and molecules which trigger our cells.
The best list for salicylates I found:
http://salicylatesensitivity.com/about/food-guide/

Apparently Salicylates are in almost every vegetable and fruit but the amount is essential. There are also reports of getting more sensible if reducing salicylates to a minimum. So it is suggested to only avoid food with high and very high salicylates.

Histamine itself can be a problem when DAO is to low but it also can be a trigger in some. And even people with high DAO can get problems with to much histamine (food poisoning, china restaurant syndrome). This histamine would add to the histamine from our mast cells.

Eating low histamine is quite easy. Other mast cell triggers limit the food a lot: Egg white, gluten, caseine (Cheese, Milk), pork(?), malt, nuts, tomatoes, spices, glutamate, colorants,...
But with salicylates it gets horrible because it restricts most fruits and vegetables.


The best may be to make a failsafe diet like http://failsafediet.wordpress.com/the-rpah-elimination-diet-failsafe/
But it needs so much dedication...

I also tried an aspirin desensitization but it did not work. I am considering do try it again because I made the mistake to start with Enteric Coated Aspirin. I actually do not know where I found the procedure but I believe it was in some papers of Dr. Afrin.

Title: Re: Therapeutic Dietician vs. Dietician
Post by KatFromMD on 02/11/14 at 06:14:22

Spartako-
Thanks for the link to the failsafe diet.  It seems to coincide rather well with things that I can and can't eat, which makes me think I should try adding in some other things from its "safe" list.  I am very reluctant to try adding new foods because I don't want to cause a huge flare that I can't get under control, and so many of the lists contradict each other.  This one at least has things such as corn as a "no-no", which is a food I've become sensitive to.  It also lists garlic and shallots as high in sulphur, and I've had trouble with both, as well as the sulphurous water where we're staying in Florida.  Sounds like another piece to the puzzle.

Title: Re: Therapeutic Dietician vs. Dietician
Post by Ladybug on 02/11/14 at 07:52:39

Wow, that FailSafe diet is pretty strict. I noticed that a few items that are low in histamine are listed as no-no.

I see that I will need to keep a food diary --- especially after last night. Just before going to bed I was as sick as a dog vomiting for hours. :o

Shame on me, but I ate 3 items that I have not eaten in a while (the devil made me do it). I ate a baked potato, some white potato chips and had a gluten-free brownie.

Everything else in my day was the usual low-histamine, GF and casein free foods and beverages.

Could eating any or all of these 3 items cause me getting sick? I'm half tempted to eat those items again to see if the same thing happens. No . . . not really. But I do wonder now.

This is interesting, but also exhausting. My heads spins with all that there is to learn and grasp. Thank you all for being such a great help with this!

Title: Re: Therapeutic Dietician vs. Dietician
Post by Joan on 02/11/14 at 17:28:09

Unfortunately, safe diets and food triggers are unique to each person.  A Fail-Safe diet for one person may not be safe for someone else.  All of the diets, including the low histamine diet, are just jumping off points for finding our own particular group of foods that we can safely eat.  If a food bothers us, we should eliminate it from our diets or wait a while and try it again on a day when we are having fewer symptoms.  

New foods should be tried one at a time, every few days.  If no symptoms occur, then another food can be added in 2 or 3 days.  If we add more than one food at a time, we can't know which one might have caused a reaction.

I don't know anybody who hasn't eaten "naughty" foods at least sometimes.  I know I have, and I've paid the price!  It's easy to get overly self-confident or just to give in to cravings and take a big chance.  Still, my diet is a whole lot more normal than when I first started having symptoms!

BTW, there's. 24-hr. stomach bug going around here to confuse everything even more!

Title: Re: Therapeutic Dietician vs. Dietician
Post by brigitte on 02/12/14 at 03:33:46

Thanks Joan! I certainly didn't mean to say that ladybug has the same triggers as me, I just wanted to let her know that sals hide in everything!  :o. But we are all different and not all sals bother me and a lot of things trigger me are not on the sal list; but mostly I am salicylate intolerant. I'm still very much in the process of figuring out my triggers.
I was laughing at you comment about getting over confident and eating something you know you shouldn't! (And paying the price!!!)
Brigitte :)

Title: Re: Therapeutic Dietician vs. Dietician
Post by Ladybug on 02/17/14 at 03:44:28

Hi Bridgette,

My allergist thinks the same as your's regarding IgE allergies. I don't understand why. I am hoping to find some reading material to send to him. If I pursue low sals intake, I will PM you. Is there a shortcut through this to find out if I am sals sensitive? Like eating something high in sals and seeing what happens? I'll look over the sals food list to see.  :-/Thanks! ~L


Britt wrote on 02/09/14 at 18:26:26:
My doctor (and I really don't have "a" doctor guiding me through this anyway) isn't on board with the food sensitivities either. He is not up on current research nor pseudo allergies. He only believes in IgE allergies of which I have none. Grrrrr......
And, like you, I deal with angioedema. I used to get hives, but, knock on wood, I haven't had them in years.
I would definitely look into avoiding salicylates. I am 100% certain that they are major triggers for me, and they hide in EVERYTHING!
If you're going to try avoiding sals, make sure you watch out for topical moisturizers, makeup, deodorant etc., as well as cleaning products, supplements and medications, and of course food. I have by no means figured it all out yet, but I have done quite a bit of searching, so if you want any tips, hopefully I can help. You can always send me a personal message!
Good luck! ;)
By the way, I have finally come to terms with the fact that I cannot tolerate any vegetable, fruit, plant oils at all. It's a bummer. But staying away from them helps a lot.
And.....I am with you on the weight gain. I have gained loads since I became really symptomatic 4 years ago. Between the depression/anxiety drugs and the antihistamines I think my metabolism has completely shut down :-/ too bad I couldn't tolerate cromolyn, for whatever reason that stuff completely takes my appetite away. Not sure if this is typical, but the two months I was on it I lost 15 pounds. I have since gained it all back >:(


Title: Re: Therapeutic Dietician vs. Dietician
Post by Joan on 02/23/14 at 12:37:34

I don't know anybody who hasn't wanted to test something we know bothers us, and I can't advocate it for anyone but myself.  However self-testing ("challenges"  in allergy terminology) can be a quick way to test things.

Just be sure to do it in a safe way.  If they can be absorbed through the skin, then I'd try making a paste of it and covering it with a band-aid or plastic wrap for 24-48 hours.  If you want to try it orally, you'd want to start with only a tiny amount of it.  You can put it between your lip and teeth and leave it there a while.  Local tingling, itching and/or swelling would give you an answer right away.  If you get any systemic reaction, I wouldn't try that substance again until I'd conferred with my doctor.  Here are some things to do to ensure safety, mostly common sense:

If a person tends to have hair trigger for anaphylaxis, it might be wise to do challenges only under a doctor's supervision.

Use only a pure form of the medicine or food that you think is bothering you.  Otherwise, it's impossible to know if it's an additive, preservative, or the main ingredient causing the problem.  If a food is used, it's hard to know for sure whether it was other things in that food causing the problem or specifically sals.

Keep medicines nearby for at least a couple of hours after trying the substance, including antihistamines (H1 and H2) and Epipens.  If there's potential for a delayed reaction, carry them with everywhere (yes, even the bathroom) for 24 hours.

Have someone else present for at least several hours after trying something new.  Delayed reactions are not uncommon.  Don't be alone overnight.

If living far from an Emergency Department in a hospital, try to go somewhere close to it for the experiment.

A person might not need that extreme level of caution, but it's better than being surprised by a big miserable reaction!

Some aspirin, especially liquid, are pure salicylates without added ingredients.  Always check the inert ingredients before taking any new medication.

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