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It'S Working - I'M Doing Better - Food Sensitivities


issie
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I haven't been here in awhile and decided to post an update. I'm seeing a new neurologist and he feels that allot of POTS issues are due to autoimmune issues. My IGG was very low. I also have some sort of neuropathy. He's trying to determine what and why. In the meantime, I've stopped eating glutten, dairy and sugar. I didn't notice a difference until 2 weeks into doing this and then BIG difference. My energy is better, I can stand, walk and stay upright longer without feeling faintey or like where's a chair. I'm being able to exercise and today - walked the grocery store instead of riding the cart. I haven't changed anything else. Except......I'm not using the high salt. I figured out that that made me feel worse in the long run. It took me a little while to get it lowered after having used so much, but now I'm using about like normal people. I think getting off those foods is what is making the most difference. It makes sense that if you are sensitive to foods, your immune system will attack the food and then attack you. I noticed that after eating something wrong - my face turned blood red. I took a Clartin and got better. I've wondered if mast cell isn't involved on my behalf - but I do think food sensitivities are involved.

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Hi Issie-

I love to hear about your progress!!! I'm very interested in your approach as I have low IgG too (400). For a while, even my white cell count was quite low (3). How did you identify your sensitivities as dairy, gluten, and sugar? I try to avoid sugar just because of the inflammation aspect, but I'd be hard pressed to pinpoint dairy & gluten as well. I also can relate to the red face after eating. That was me, as well, for most of my life. That's under control on the MCAD regimen, but maybe because I'm treating my unDXed food allergies..... I guess they woudn't be allergies as I'm officially allergic to nothing (per testing), but maybe extreme food sensitivities.

In a weird way, it makes sense that the high salt would help if it WAS a food allergy/sensitivities. Apparently blood vessels expand & leak plasma during a reaction. That could have been you- every time you were exposed to dairy & gluten. The salt would have helped you retain water which would have replaced the lost plasma- a vicious cycle. A band-aid at best & NOT treating the underlying issue. Avoiding the triggers IS treating the underlying problem & makes sense that a claritin (an H-1) would also help.

As far as how this related to MCAD???? Not sure. In MCAD, the mast cells are simply over-reactive and can be set off by anything...maybe starting the above described process. Hard to avoid what you can't identify.... Maybe that's why the consistent med regimen is necessary.

BTW, in a true gluten allergy or sensitivity, folks are usually very deficient in IgA. How's your level? Mine is sometimes low...

Thanks for sharing. Keep feeling better. Happy Holidays!!!!

Julie

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Hi Julie,

I looked up on line what to do for autoimmune issues. I ran across an article about a little girl who had tried everything and was on massive amounts of steroids and drugs and couldn't get relief. She did this diet and got off all meds and is a normal living child. I figured if it worked for her - it would work for me. I don't want to take meds and don't want to do the IVIG or the plasmapheresis. It made sense to me that something is causing the immune system to over react. Since I also have vitiligo and alopecia - both auto immune things - I couldn't lose by trying it. I also just the post questioning latex foods. I realized I had been staying off of them also for about 2 weeks and last week had done them again and was having issues - that I couldn't figure out. So, there's something else I'll cut out for awhile and see if it makes a difference. I already knew I'm sensitive to anything to do with a bird and anything in the rose family. There is the Elisa allergy test that can be done to find food sensitivities - but just paying allot of attention and keeping a food diary works too. If you write down after you eat something - how you feel that a pattern will emerge and you can figure out what you did and if you are always reacting to that food. It doesn't mean that you have a true allergy - but a sensitivity can be just as bad and trigger a reaction.

That makes sense about the salt. When I was real good and didn't do anything I was trying to stay away from - I didn't need the support hose. In fact my neuropathy got better. For the first time in over a year, I didn't have to wear my support hose to sleep. My legs and feet didn't go numb and hurt and I could feel the sheets on the bed. If, I wasn't having a reaction to the foods then I didn't need the extra fluid to stop the leaking. I didn't feel as dehydrated either. Also, as earlier discovered - I think it took time for my aldesterone levels to adjust to pick back up the fluid balance - from taking in too much salt. My aldesterone levels were low when using the salt. (For those that haven't read the info on renin and aldesterone - you can do a search and find our conversations on that. I also have a compiled version of all the research I've done on this subject - if you PM me I'll get it to you.)

The pieces are coming together.

As for the Iga - mine was okay. I've also been checked for celiac and don't have it. But, I do know that I'm sensitive to gluten - found that out for myself. I'm also starting to lose weight and not having to try very hard to do it. The bloating and swelling in my abs has gone down considerably. Also the elimination issues are nearly gone. I did add papaya to my food choices and pineapple. Both are enzymes and help with inflammation.

Issie

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Hope For All, did you read the anti-cancer book or try the diet? Did Dr. Grubb tell you why he recommended it for POTS patients (it looks like a healthy idea for anyone, I just wondered if it was particularly helpful for POTS).

Also, and I have no idea if I'm right about this or if I'm right, but it seemed that when I was really sick avoiding gluten helped me. When I would try to eat it again, I would feel bad, get GI upset. Now that I seem to be feeling a bit better overall and improving on the MCAD meds, I can tolerate it again without obvious symptoms. I don't know what that's all about - I have read a bit about inflammation or other processes perhaps allowing inappropriate leaking of food substances from the gut. Maybe as inflammating is reduced, that is also reduced?

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Minerva Pediatr. 2010 Aug;62(4):333-8.

Autonomic imbalance in celiac children.

Barbato M, Curione M, Amato S, Carbone J, Briani C, Pannone V, Maiella G, Di Camillo C, Panetti D, Cucchiara S.

Department of Pediatrics, La Sapienza University, Rome, Italy - mario.curione@uniroma1.it.

Abstract

AIM: Involvement of many organs and apparatus such as heart, central and peripheral nervous systems have been reported in celiac disease. Autonomic neuropathy has frequently been reported both in untreated and in gluten free diet (GFD) adult patients and, to our knowledge, has never been investigated in celiac children. The aim of the study was to evaluate autonomic function in children with celiac disease.

METHODS: Fifteen children with untreated celiac disease were enrolled. Fifteen healthy children served as controls. None of the patients was diabetic. Central or peripheral neurological diseases, were absent. In all participants, at recruitment and after 24 months of GFD, serum anti-tTG and AEA levels, inflammatory markers, IgG, IgM and IgA anti-ganglioside antibodies, were performed. Heart rate variability indexes were employed to evaluate autonomic system balance.

RESULTS: Our results indicate that also children with celiac disease may exhibit an imbalance of the neurovegetative system with a prevailing sympathetic tone, persisting on a GFD. All presented symptoms such as abdominal pain, diarrhea or constipation, vomiting, meteorism, regurgitation in whom autonomic dysfunction could be involved, but these symptoms disappeared on gluten free diet. This tend to exclude the prevailing sympathetic tone as a main factor underlying symptoms of celiac disease.

CONCLUSION: Children affected by celiac disease exhibit an enhanced sympathetic tone, persisting after 24 months of GFD whereas gastrointestinal and systemic symptoms disappear. The pathogenesis of this phenomenon still remains unclear.

PMID: 20940666

I am guessing that this is simply another "cause" or "sub-type" for POTS. Apparently the ANS dysfunction continues, even on a gluten free diet, but like diabetes would, celiac or gluten sensitivity causes the same dysautonomias and control of the cause helps with the symptoms. Celiac would simply be the "cause" for your POTS, like MCAD, post-viral or any number of other conditions. It is great that it makes you feel better though, I hope you've found your cure! :D

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Very interesting info Issie. So glad to hear that you're doing so much better. That's fantastic! Thanks for sharing your progress.

I started a food diary awhile back but didn't keep it up long enough to find a pattern to anything. You've motivated me to try it again. I've certainly noticed that sugar will REALLY have a negative impact on my energy level some days. When I eat a little bit, it's like watching the last grains of sand run out of an old fashioned egg timer. I can just feel the energy slipping away over a matter of minutes. Other days, it doesn't have that same effect so I keep wondering what the mechanism is that allows me to handle sugar some days and not others.

I don't eat much sugar usually because of the reactive hypoglycemia but recently have had a lot of days where I've been craving it and haven't had the same energy drain that I usually get. Too weird!

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If you are having food sensitivities (allergies) the MCAD treatment would be treating this. But, if you eliminate some of the things causing the reaction in the first place - there might not be a need for the MCAD treatment in the first place. That's a hope on my behalf anyway. Because I do find that a Clartin and Tagament work well for me at times. I'm hoping that if I can somehow reset my autoimmune response - there won't be a need for these meds. The diet isn't totally taking everything "bad" away, but is making a significant improvement in my life quality.

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I went GF for a couple of months and it didn't help (that I could tell). So I got the genetic test and supposedly Celiac is a low-probability for me.

I do occasionally get random hives...from eating, being too warm, etc. But I've had that red face/chest from eating (and stomach pains/diarrhea). I take Zyrtec and Zantac daily to help with the hives.

I also have autoimmune issues, my ANA is high.

I'm going to look at the diet someone linked and would like to wrap my head around this problem. It just doesn't feel right I'd have POTS/Allergies/Sensitives/Autoiummune disease separately. I could accept having POTS and allergies. or Sensitives and an Autoimmune disease. But too much overlaps!

Please share if you find out more. What exactly are you eating now?

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I'm mostly eating fruits and vegtables, meat and fish and occassional rice and corn. I really like buckwheat and it's not a grain. I'm trying to stay away from the nightshade family - white potatoes, peppers, tomatoes - because it makes me hurt more. I also know my Elisa allergy test showed me allergic to bird products and anything in the rose family - so staying away from those things - as much as possible. Not having refind sugar or any dairy products - except still allowing organic butter and occassional feta (goat cheese) on a greek salad. Wondering about the latex family also, paying close attention to see if it is bothering me. Certain nuts are also a problem. The best thing to do is keep a food diary and just stay away from the things you're reacting to. I've lost 23 lbs. and I'm not having to really try.in That's a good thing, because I have allot more to go. I think staying off the grains, dairy and sugar are the most important things to do. I've read lots about MS patients eliminating these things and their MS getting a whole lot better. Hoping that this will be the case for me too. I'm not doing it perfectly - but making a conscious effort to stick to it the best I can.

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Is there somewhere online you can find the family groups of food? I've never heard of that before

Weird you said bird family- I'm allergic to chicken & turkey so I just assume all other things like that evern though I have been told chicken & turkey are different! I still tested positive for both! I'd have the strangest reactions too it felt like my throat was closing & with lots of mucus but then as it loosened I'd get hiccups that would last for days. It seemed like I constantly had hiccups. Once I stopped eating poultry the hiccups went away

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I wonder if the bird allergies might be more of an allergy to what the bird ate?? I know chickens are fed corn and/or soy-based products. I guess I'm wondering if y'all might have the allergy indirectly to the corn or soy.

I have actually read the Anticancer book, last spring or so. It was interesting and pretty much common sense stuff, about eating healthy. I think I will pull it out again and reread it.

I so agree with you, Catlady, about it not being coincedence. I also had autoimmune thyroid(removed) and a high ANA(no lupus), and a high IgA(no celiac). So, something's going on body-wide, just don't know what.

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I wonder if the bird allergies might be more of an allergy to what the bird ate?? I know chickens are fed corn and/or soy-based products. I guess I'm wondering if y'all might have the allergy indirectly to the corn or soy.

I have actually read the Anticancer book, last spring or so. It was interesting and pretty much common sense stuff, about eating healthy. I think I will pull it out again and reread it.

I so agree with you, Catlady, about it not being coincedence. I also had autoimmune thyroid(removed) and a high ANA(no lupus), and a high IgA(no celiac). So, something's going on body-wide, just don't know what.

Possibly , but not totally. It could be that they shoot them up with antibiotics and hormones - mostly estrogen. My doc. told me if I ever wanted to get my hormones more in balance - I had to quit eating anything related to a bird - unless it was known organic. I am allergic to soy and thinking that corn as all grains seem to be a problem. But, in that I react so horribly to a feather pillow - thinking allergic to birds is most likely in my case.

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