Eating Out With Food Allergies...

[Gingergrrl]

@Gingergrrl -I honestly don't feel that my diagnoses is ME either. I am not sure, but I just don't believe so. I feel it's been autoimmune all along.

That is interesting and I have not felt that ME/CFS was my diagnosis for a long time but my main doctor (who is an ME/CFS specialist) confirmed this on the phone yesterday. In my case, it started out viral (severe mono/EBV) but shifted into autoimmune. I do not know at what point I developed all of the 11 autoantibodies. The two Hashimoto's Auto Abs were discovered in 2013. But the other nine were not discovered until 2016.

It sounds like your doctor is fantastic. Is this the one at Stanford?

No, not at Stanford. I did go there almost a year ago but it was a bad situation all around and will leave it at that! I am speaking of my doctor at OMI who is amazing. If I fully recover, I owe him my life.

Are you out and about much more now?

Yes although I still have to use a wheelchair. But my doctor said that his goal is for me to get to the point that I do not have to use it. He cannot and would never make any false promises but he said the plan is for me to not have to require the wheelchair. He said that is his goal and he intends to get me there and will not give up on me. I am sometimes able to walk between 20-40 feet in my apt without the wheelchair which I could not do at all prior to IVIG. It is very small but I am trying to view each small step as a blessing.

I am still so glad you can take IVIG.

IVIG (and more specifically the high dose/autoimmune IVIG) has been the best treatment I have tried in 3-4 years (and I have tried a lot of things LOL). Even though some batches give me a headache and immune reaction, it only lasts a few days and is tolerable b/c the pay off is so worth it. I will be continuing with IVIG until the end of May and we are about to start the process of applying for Rituximab.

IVIG sponges up and knocks down the autoantibodies but sadly more keep getting produced unless you attempt to wipe out the B cells and stop the Auto Abs at production level. We are planning for 2-3 levels of denial and appeal with my insurance (so it will not be any time soon!) but I am excited that it will be happening (eventually). The infusion center where I get my IVIG is actually a cancer center and they administer RTX frequently so it will be perfect IMO b/c they are very familiar with mast cell patients b/c they are connected to the hospital where I see my MCAS specialist.

The Vitamin Shoppe is in my back yard. I will definitely get it.

Awesome and I hope the Quercetin + Vit C works well for you.

My wrist still is so painful and I am supposed to have another surgery, but can't. There is no way.

I am so sorry to hear this. What additional surgery do you need to have? Two is enough and you should be done and get to relax now! Surgery terrifies me b/c of my auto-antibody that blocks the calcium channel and the anesthesiologist would really have to understand this (plus my MCAS risk) before operating if I ever needed surgery. My food allergies are in remission but my MCAS Doc said that IV contrast dyes, and many anesthesias, are still very high risk for me. I am also still a risk if fluid is infused too fast (for third spacing and pulmonary edema) b/c of the MCAS so the surgeon/ anesthesiologist would have to grasp this piece as well. I am not sure if any of these are issues for you but wanted to mention them just in case.

Have you been tested for auto-antibodies outside of the major ones? My ANA is 1:160, speckled pattern (which didn't really concern anyone on it's own) vs. the autoantibodies combined with my dysautonomia and breathing/neuromuscular weakness. I never had fatigue or delayed PEM vs. every day was exactly the same and just kept getting worse and worse until IVIG. Now I can open doors and packages and water bottles on my own (b/c my arm strength is so much better!) just as an example.

It has been such a long process to get to this point (and I am still very much in the middle of it) but I am hoping that you will find the right treatment. MCAS hinders everything and now for the first time in 2+ years my doctor feels I am safe to color my hair which I will be doing on Sat and am so excited! It probably would have killed me if I'd attempted it in 2015! So things can change but if I had never treated the MCAS or learned about these autoantibodies, I don't know where I would be today.

 

[Misfit Toy]

@Gingergrrl -when do you take your Quercetin? With food or on it's own? I don't know when to take it.

I am so happy to read about all of the positive news. I am sorry, but I can't focus enough to understand a lot of the questions or things you are saying. My ANA...I am assuming my Sjogrens, perhaps? Not sure.

I am not well enough.

It sounds like you will be able to handle the Ritux as you are handling so much now. All such good news! So glad to hear.

Surgery; my wrist is quite painful because it's super thin and the pins and plate need to come out but I can't do it. I am just not well enough. My system could never handle it.

 

[Chocolove]

Chinese food often contains MSG which can be a major trigger of allergies even in someone who does not have MCAS.

Since the 1960's, the common term was Chinese Restaurant Syndrome. Have had the problem myself. I avoid MSG and only go to Chinese restaurants that advertise no MSG, and luckily haven't had that problem since.

 

[Gingergrrl]

@Gingergrrl -when do you take your Quercetin? With food or on it's own? I don't know when to take it.

At present, I take Quercetin once a day 30 min prior to eating but there is no reason that you would need to do it this way. Initially (in 2015) I required a set of seven meds/supplements (taken 30 min prior to eating) in order to eat just 4-5 foods like rice & lamb or a sweet potato. This is not the case now but I got so used to taking these as "pre food meds" that it became a habit. So even though there are just four meds now (vs. seven) I still take them 30-60 min prior to eating. But I suspect you could take it whenever you want.

I am so happy to read about all of the positive news. I am sorry, but I can't focus enough to understand a lot of the questions or things you are saying. My ANA...I am assuming my Sjogrens, perhaps? Not sure.

No worries and ANA is the anti-nuclear antibody test and is a general test that most rheumatologists (or other docs) would do to see if you have autoimmune antibodies. If it is 1:40 ratio (or less) it is considered negative. I was always negative but now am 1:160 and am certain this is no coincidence considering all of the auto-antibodies that I have. In my case, I do not have any of the common/known autoimmune diseases like Sjogrens, RA, Lupus, etc. I do have Hashimoto's but the rest of my auto-antibodies are uncommon.

One of my Auto-Abs correlates with SPS or diabetes (which I don't have), another correlates with LEMS or "small cell lung cancer" (which I don't have) and the others correlate with dysautonomia and autoimmune form of POTS (which I do have) plus neuromuscular weakness (which I do have). So I am an autoimmune mess LOL but science is not yet advanced enough to understand or care about the more rare autoantibodies outside of a handful of doctors world-wide. Some Auto-Abs correlate with paraneoplastic syndromes but so far in my case, no cancer has been found.

It sounds like you will be able to handle the Ritux as you are handling so much now. All such good news! So glad to hear.

I truly do not know if I will handle RTX (since it is completely different than IVIG) but am not afraid to try it. I suspect it is several months away and will not be approved quickly by insurance (if at all) and then we figure out how to proceed.

Surgery; my wrist is quite painful because it's super thin and the pins and plate need to come out but I can't do it. I am just not well enough. My system could never handle it.

Am so sorry and did not realize that the pins and plate needed to come out. I agree that it would overwhelm your system right now and if the doctor says it's okay to wait, I would wait until your MCAS/allergic reactions have calmed down.

Since the 1960's, the common term was Chinese Restaurant Syndrome. Have had the problem myself. I avoid MSG and only go to Chinese restaurants that advertise no MSG, and luckily haven't had that problem since.

Yes and my mom (who is healthy) is allergic to MSG and used to get reactions to Chinese Food or to salad bars that used MSG when I was a child. Some were so bad they caused chest pain that mimicked a heart attack and we almost had to take her to the ER a few times. Salad bars here no longer use MSG and I think Chinese restaurants have to disclose if they use it. Strangely, growing up, I could tolerate MSG with no problem but now I cannot so I avoid it completely. I have several restaurants I can eat at or order as take-out but I avoid all Chinese food to be safe (even though I really like it)!

 

[Misfit Toy]

@Gingergrrl -thank you for answering my questions...seriously. I will have to ask to be tested for I guess all of the major antibodies, other than Sjogrens. I do not have Hashi's which is unbelievable. It kind of makes no sense.

I took the Quercetin and noticed nothing, but it was only one day. I am wondering how long it took people to notice something.

 

[Gingergrrl]

@Gingergrrl -thank you for answering my questions...seriously.

No problem and wish I could do more to help!

will have to ask to be tested for I guess all of the major antibodies, other than Sjogrens. I do not have Hashi's which is unbelievable. It kind of makes no sense.

I am surprised that your doc did not test your ANA and all of the common autoimmune diseases? Am also surprised you do not have Hashi's! The more rare autoantibody tests that I did, I had the blood sent to Mayo Clinic and Cell Trend in Germany and these were not common tests. I can explain more (only if it would be helpful) and don't want to overwhelm you with too much info!

I took the Quercetin and noticed nothing, but it was only one day. I am wondering how long it took people to notice something.

When I started Quercetin, I was taking everything under the sun to try to stop the anaphylaxis to all food (mid 2015) so I never took it in isolation. Was taking Benadryl & Gastrochrom (neither which worked for me and I do not tolerate either) and then switched to Zyrtec & Ketotefin plus Quercetin, Pepcid, NeuroProtek, Daosin/Histamine Block, Cortef, and Atarax as a rescue med.

I do not take all of that stuff now (b/c no longer need it) but I never took Quercetin by itself so no idea how it would work alone.

 

[Chocolove]

MSG is still generally regarded as safe.
http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfcfr/CFRSearch.cfm?fr=182.1

How to recognize MSG in food labels - it is not easy:
If you think MSG may be a problem for you, you need to watch labels for items such as:

hydrolized or autolized (anything), malt extract, gelatin, glutamate, yeast extract/food/nutrient, sodium caseinate, textured protein

There are many other items that may contain MSG, such as bullion/broth, seasonings, soup base, candy and gum, marmite, vegemite, and anything that says, "natural flavorings." Even veggies in a salad bar are often treated with MSG...
.....
There used to be a major problem with the use of sulfites at salad bars which resulted in their ban on fresh foods in 1986. Sulfites are still found in some foods - dried fruit, wine, wine vinegars...
See:
U.S. ISSUES BAN ON SULFITES' USE IN CERTAIN FOODS
www.nytimes.com/...issues-ban-on-sulfites-use-in-certain-foods.html
Jul 09, 1986 · U.S. ISSUES BAN ON SULFITES' USE IN CERTAIN FOODS ... for a ban on sulfites in ... the major problem was in the salad bars and in fresh ...

 

[Strawberry]

I took the Quercetin and noticed nothing, but it was only one day. I am wondering how long it took people to notice something.

I have only taken Neuroprotek (which contains quercetin) not quercetin only, but it took almost two weeks before I felt any different. I don't feel it helps me much with my MCAS and MCS issues, but it helps with the CFS brain fog.

 

[Timaca]

Hi Misfit Toy~
I am sorry for your problems! I understand. I have LOTS of food intolerance issues....including histamine. I don't eat out much at all. I do have a blog that you might find helpful. http://www.youseasonwithlove.com/ Scroll down and you'll see a recent post about traveling with food intolerances. I have lots of histamine info on the resources page.

I'll be working on the blog some this weekend, so it might be down for a bit....but hopefully, not for too long.

Hang in there, it can get better. I'm still working out what foods do and don't work for me and I've been at it for 4 years!

 

[Misfit Toy]

I am seeing a lot of people with MCAS posting that Quercetin is an issue because of the Salicylates. I know nothing about this but have problems with wine. Not sure whether to take it now or not.

 

[Misfit Toy]

The more rare autoantibody tests that I did, I had the blood sent to Mayo Clinic and Cell Trend in Germany and these were not common tests. I can explain more (only if it would be helpful) and don't want to overwhelm you with too much info!

Ginger, I had the test for lupus, RA, etc....but I know nothing of these other tests. Wow. They must be super expensive. Why must the test be shipped to Germany? TY for so much great info.

 

[Gingergrrl]

There used to be a major problem with the use of sulfites at salad bars which resulted in their ban on fresh foods in 1986. Sulfites are still found in some foods - dried fruit, wine, wine vinegars...

@Chocolove Thanks for the additional info on sulfites and I did not realize that the ban occurred in 1986 but that sounds about right when I think about the period of time that my mom was getting deathly ill reactions from salad bars. I still avoid dried fruit (unless it is organic and label states no sulfites) and avoid wine and fermented foods.

I am seeing a lot of people with MCAS posting that Quercetin is an issue because of the Salicylates. I know nothing about this but have problems with wine. Not sure whether to take it now or not.

I had not heard this before and Quercetin is a natural antihistamine and (in my case) I tolerated it well right from the beginning, even when I was having anaphylaxis to all food but water, in mid 2015. I do not tolerate wine (and it's one of the highest histamine foods on the planet!) but Quercetin is an anti-histamine so it should be the opposite. But definitely listen to your doctor and do what feels right for your body.

Ginger, I had the test for lupus, RA, etc....but I know nothing of these other tests. Wow. They must be super expensive. Why must the test be shipped to Germany? TY for so much great info.

If you were tested for Lupus, RA, etc, I am pretty sure that your doc tested your ANA (general autoimmune levels) but you just didn't know it. The tests I had sent to Mayo ended up covered by insurance and not too expensive but the tests that I sent to Cell Trend in Germany were not covered (I didn't even bother trying b/c not U.S. tests) and were on the expensive side. They were worth it for me and my doctor to have the info though and the results helped to get me high dose IVIG, and I hope will help to get RTX in the future. Feel free to PM me if you have specific questions (or I can answer here, too, either way is okay).

 

[Allyb510]

How many people can't eat out, or can only eat out at very few restaurants? Since having my thyroidectomy, my food allergies have become out of control. My body is having a field day. Food and medicines...

I went to dinner tonight, had Chinese...shrimp with broccoli and in a white sauce. Never go out anymore. Up all night long itching and now a migraine. Can't get away with any foods that I could handle before. NONE. I had sensitivity before. Now, it's all out war and allergy.

How many can't eat out? Or, can only go out to so few restaurants?

I have no clue on how to treat this. I am going to be tested for Mast Cell.

I can't even have the most favorite food...chocolate. Allergic to milk and soy and milk and soy is in every form of chocolate including dark. Than you have chocolate Liquor in dark chocolate. Nope.

Do have a lot of yeast. Bone broth...hmm...just what does it do because I notice nothing. Plus, I get tired of consuming it. On a great probiotic, but what is it doing? I have no clue. Can't consume yogurt due to milk and goat allergy. I am not supposed to have fermented foods at all.

I totally get where you're coming from Misfit! I haven't eaten food from a restaurant since 2000. I only have 6 or 7 'safe' foods in total now anyway (and even they elicit massive symptoms), as absolutely everything else has been ruled out over the years.

Interesting you should mention MCAD. I have an appointment in 10 days to see a well known allergist in Leicester who is one of the few UK doctors capable of diagnosing mast cell disease. I'll be surprised if this level of allergy is caused by ME/?Lyme Disease/SIBO alone but will hopefully soon find out.

It's very disturbing, isn't it, and it affects the way you treat your illnesses (or don't treat them) massively. So many drugs and supplements are off limits. I could talk for hours on this subject but you know it all already!

Bone broth is so good but makes me itch like crazy! Soft goats cheese (not hard!) is okay for me and I eat it like sweets but there are so few other foods. I haven't eaten chocolate for years . Fermented foods are tough going...probably because of the histamine.

If your probiotic is tolerated, keep going, as so often they aren't. And let us know how you get on with the MCAD doc if you can. This diagnosis can have a big impact on your other treatment.

All the best. x