My paleo adventure

[mbeezie]

Hi PP Buddies,

It's been a while since I gave an update. It's coming up on 4 years since I found this site. The first few years were really spent chasing a diagnosis because back then there were only a handful of us making a connection with mast cells and our symptoms. Since the beginning of my illness I have addressed diet and had good results with various diet manipulations (enterolab, fodmaps, MRT . . . ). I would say I have been paleo-ish but never bit the bullet and went full on, 100% paleo.

On January 1 of this year my husband and I started a paleo challenge and I followed it to the letter. My incentive was to see if it impacted the hives I have been experiencing. I was very suspicious that my hives were being triggered by Hashimoto's because I have been experiencing some hypothyroid symptoms (unexplained weight gain, increase in cholesterol, cold, thinning eye brows, dry skin etc). Chronic urticaria has an association with Hashimoto's and I previously had a slightly elevates ANA so I went to my allergist a few weeks ago to get things checked out. I don't have a hard copy of my results yet but they told me everything was normal, and they checked several thyroid markers. I am still not convinced that my thyroid is working properly and sometimes think I vacillate between hyper and hypo symptoms, which sometimes happens before true hypothyroid sets in.

Initially on the paleo diet I experienced some loose stools and just attributed it to more fiber and less of the starches - even Dr. Cordain talks about this in his book. That resolved after a few days I felt great and was having normans again. I was losing weight, the hives were becoming less intense and a few other annoying symptoms stopped. After about 2 weeks on the diet I began having lots of GI symptoms consistent with SIBO, like mushy urgent stools that were very sticky, lots of gas etc. I got on VSL3 again and low fodmaps and now things seem to be under better control. I have never tested for SIBO but have long believed I have dysbiosis. I began to wonder if the bout of GI symptoms I had after starting the paleo diet were the result of some die-off with the SIBO. I have read a little about that with SIBO, as well as yeast. I really don't think I had any sort of virus or flu - didn't feel bad in any way other than I described. Anyone else experience that going paleo?

One of the annoying symptoms that was alleviated with paleo was vaginal burning and itchiness (I liken it to what others on this site say is battery acid D from dairy products). I went to my GYN last summer and she said I had bacterial vaginosis - even did a culture - and prescribed clindamycin for a month! I was very skeptical but at my wits end so I did it and it got no improvement. I realized, however, that when I took antihistamines the symptoms went away. I figured it was just somehow related to my mast cell issues. After going paleo and having the hives reduce I was taking fewer antihistamines and realized the symptoms were gone. I recently came across this info on allergic vaginitis and the doc finds food to be a culprit. http://www.renaissanceallergist.com/the ... ience.html

My hubby and I took a trip to Seattle earlier in the month so I eased up on the paleo out of need. I tried to stay paleo but it was more difficult travelling so I ate some rice and potatoes. The rice, which I thought I previously tolerated, gave me such a bloated, full discomfort that I have no desire to ever eat it again. I have been eating dark chocolate and wine as well. The chocolate and wine caused me to itch a little but no hives, and was surely caused by higher histamine level. I have decided that I need to stay as paleo as possible because it does seem to be working. I still need to get my cholesterol checked to see if it coming down, but surely it is.

So that's my health update for now. I do still follow posts even though I don't always respond . . . I am still learning like the rest of you and appreciate everyone's updates.

Hugs,

Mary Beth

[Leah]

Thanks for the update mary Beth. I read the article and found it interesting because I was Dx with DIV many years before I was Dx with MC. It took many doctors and treatments to find a combination of things that helped , but no cure. One of those things is taking a daily anti-histamine. The other is a once a week dose of clindamycin and a steroid suppository. I believe all of my autoimmune stuff is caused by me being IgA deficient ( and some IgG also) since IgA is the "mucus antibodies". I was hoping my symptoms would go away once I got the MC under control, but it doesn't seem to matter :( Hormones seem to make a difference also.

Leah

[Gabes-Apg]

wow
thanks for the update....

the whole mast cell/histamine thing intrigues me. Why it is so sensitve?
and the thyroid etc - in the blood tests quite a few of us test 'normal' but the symptoms tell another story.... mmmmmm

hope your business is doing well, the family are well

take care
xo

[Zizzle]

Mary Beth,
Great timing of your post, as I'm considering starting a 30 day paleo (or GAPS, or Perfect Health, SCD, or equivalent) diet challenge. I've been studying the autoimmune protocols for the various paleo-style diets, trying to figure out what truly has to go. I'm on the fence about nuts, seeds, nightshades, and white rice. I'm also opposed to limiting starchy vegetables like yams and squashes. My digestion is perfect while on prednisone, so it's hard to know what if anything causes me trouble nowadays. I do feel like hefty servings of corn products sit in my belly like a ton of bricks, so I'm ready to let corn go, but I'm not sure it's like gluten, where I'd avoid all corn starch. Just sizeable portions.

Two observations regarding the no-grains rules. These diets stress the importance of "never cheating," but I wonder if they really should be focused on not cheating where gluten is concerned? I mean is a little white rice going to derail your health if your diet is 90% healthful vegetables and meats?

You mention feeling awful after ingesting a grain. Isn't it likely that after a month of zero grains, your body stops producing amylase enzyme, and therefore grains will cause indigestion? Same as re-introcing lactose after a long break? Perhaps you should experiment again with a digestive enzyme on board?

I know I'm rationalizing...looking for reasons to avoid full scale paleo. But I'm wondering how much it can help my chronic skin inflammation if I don't think I can sustain a 100% paleo diet for the rest of my life. I mean, can you do it until you're flare is over, then reindroduce some forbidden foods? Or will your body revolt and return to its inflammatory state in short order?

I'm so confused, and I'm not ready to make the 100% plunge unless I know I'll get the results I seek. I mean, is paleo really an autoimmune cure-all?

Incidentally, I also have clinical hypothyroid symptoms (low temp, low pulse, low BP) but various thyroid tests over the years have always indicated optimal levels and no anti-thyroid antibodies. Some suspect Lyme disease in this phenomenon, because the spirochete likes a cooler body temp. But I've tested negative for Lyme and don't have joint or neurological symptoms.

My diagnosis is closely linked to EBV and other viruses, so I question how much power I really have to control it thru diet. Many have tried with only short-term results, if that.

I don't know what to do! If my rash weren't so ever present, if it responded more to transient triggers, it would be easier to know which course to take.

Anyway, I admire your commitment. Please keep us posted on your progress.

[Lesley]

It is amazing to me how everyone seems to reach the same conclusions at the same time, and try the same remedies. Mary Beth, your story is so interesting, though I don't think I have mast cell issues. My doctor authorized the blood tests, which were negative. Also, taking antihistamines didn't seem to help.

I have just had a bout of vaginosis (brown horrible discharge) accompanied by my usual UTI. Or, most likely, the other way around.
This time, instead of the usual Cipro only, and only a short 3-5 days of it, I asked to have it for 7 days, since I never seem to completely rid myself of the infection, and I took it with Flagyl for the same 7 days.
Lo and Behold! I seem to be infection free for the first time for a very long time. My incontinence has improved no end, which thrills me, since I still get up 4 or 5 times a night, but can now reach the toilet and don't have to change at least 2x.
I have also had a bout of what I call the itchy scratchies. Horrible.
I also have mouth sores, mostly on the right side of my mouth. Looks like thrush, but I am not sure it is.

A few days ago I decided I would go paleo as much as possible since I would benefit from losing a few pounds on my belly.
Given my sensitivities basically, in my case, this means I need to cut out potatoes and oats, since everything else is long gone. EXCEPT for sugar. This is the most difficult part. I haven't managed it yet, but hope to wean myself off it in time. My dry mouth and GERD mean I need to keep something in it to keep it moist, and I am trying to figure out alternatives. I can't sip water because of my hyponatremia.

I am eating paleo muffins and nut bread, so nuts are part of my diet. No other nightshades now.
Other than that it's meat, fish, either cooked veggies or juice, and fruit smoothies, but not every day.
I have eggs in the baked goods, which I seem to tolerate.

I still have to take stool softeners, and, although the stool is formed and oddly colored, there is still mucous. But it is way better than it was.

I still seem to spend forever in the kitchen, since everything is from scratch (including grinding the nut flours) and have very little energy, but it IS better.

I so appreciate the folks on this forum. I learn something new every time I have the enery to come and read.

[mbeezie]

Zizzle,

I'm not sure I would have tried the full-on paleo diet if it weren't for the rash. I'm the mother of a ravenous teenage boy, so there are some grains in my kitchen and eating the same things is much easier. But the ever-present itchy rash was driving me bananas, and I know you understand that. I was eating sweet potatoes because Dr. Cordain sanctions them for athletes, so I think I may still have had some amylase production, but who knows? I quickly realized that I needed to eat sweet potatoes because I was hitting the wall when I rode my bike. I am sure there wasn't much glycogen stored and my husband I both felt weak after riding for about 45 minutes.


Lesley,

Sounds like things have improved on some fronts for you, but others not so much. Like you, my symptoms seem to jump around . . . . clear one thing up and another emerges. It really is draining. Hang in there.


Gabes,

I have often wondered about the mast cell/histamine thing being so sensitive as well. My allergist believes I have some sort of genetic polymorphism (because I have siblings with similar problems) that causes me to be intolerant to histamine levels that others could easily handle. This makes sense to me because all of my tests have come back normal.

Thanks for asking about my business and family. My business is steadily growing and I couldn't be happier with what I am doing (mostly couples counseling, only a smidgeon of MRT). BTW, we are looking at a Xmas trip to Australia in 2014 . . .hopefully we could meet up.


Mary Beth

[Lesley]

45 minutes before you don't have strength? Good heavens! I feel that after 5 minutes. If I could go for 45 minutes I would eat a bucket of sweet potatoes!

I am losing weight. It's important for me to do so. When I get to my goal I will add in a few "bad" carbs here and there so I don't lose more. If I find I am losing strength I will put more back into my diet in the form of the grains I can handle.

I understand what you say because I feel that I reach a certain point where I am coasting along in a bearable direction, and MC decides to take a detour into places I don't recognize, and I have to start all over again. Draining is a masterpiece of understatement.

[Bifcus16]

Zizzle,

The various 'rehab' diets say no cheating because the consensus of opinion is you really need to give the full suite of changes a serious chance to to work synergystically. It's bit like the experience of people of this forum, that once you have removed one or two irritants, the others will start to play up. Or people who don't get relief from ditching gluten because they also have a soy issue.

You don't have to do Whole30. You can live your life your way. If you ARE going to do Whole30, then commit to it 100% for that 30 days. Then eat whatever you like at the end of that period. I haven't done it yet, and I have been mostly paleo since January. It can wait until I feel the time is right.

Cordain encourages 85% paleo - one non compliant meal a week. Non compliant does not have to mean gluteny pizza. It can just mean oyster sauce in your stir fry, or something else close to paleo. So far I have good 100% weeks, and others are not so. I figure that 'mostly paleo' is very sustainable if you don't stress over 100%.

Like a lot of paleo/primal folk, I have found my carbs have naturally tended to be lowish. I have an issue with excess weight and overeating, and low and behold, when the carbs are low for a couple of days I am suddenly not all that hungry anymore. Have something unwise, and the next day I starving again. Duhhhh.

You might be interested in this one if you haven't found it already:
http://www.thepaleomom.com/the-autoimmune-protocol-aip

It can be a journey.

[Lesley]

OK, revise. I am NOT losing weight. And I am so hungry for potatoes! The oats, well I can manage though I miss them. But no potatoes? That's killing me.

Why am I not losing weight? I will go back to potatoes if it doesn't start to go away soon!

[tex]

Lesley,

IMO, if you can't lose weight on a paleo diet, you are almost surely hypothyroid, or if you are taking a thyroid supplement, it is inadequate.

Tex

[Zizzle]

Well, my journey may be hitting a roadblock. I love the paleomom web pages, but wow, that autoimmune protocol is severely restrictive! No eggs, nuts, seeds,legumes, grains, coconut fiber, alcohol, sugars, etc and zero cheating required to get the beneficial effect? I guess I'll never get better.

I'm taking my daughter to a high-end pediatric gastro tomorrow to talk about her diarrhea and legume allergies. I just need her to tell me what we are dealing with, since her allergist clearly has no clue (she told us to see a GI next). She had no idea soy allergy could be caused by birch pollen cross-reactivity. So we (Correction, I) live in fear of potential anaphylaxis, when perhaps it's nowhere near that serious.

Hubby asked tonight if I think it's a coincidence that everyone in the family has "food allergy issues" now...implying that I diagnosed my daughter and fed that info to her doctors to get the result I wanted. He asked me not to lead the doctor tomorrow, to let her tell me her opinion before I intervene. Fine with me!! I told him I want nothing more than a doctor who can direct our care and tell me what to do...but that requires them to have a clue.

Hubby reiterated that he's not at all concerned about our daughter's supposed food allergies (proven with RAST and IGE skin prick tests ). He'll be solo with the kids in Florida for a few days eating at restaurants. I had to ask him if he's OK with being the one responsible if our child goes into anaphylaxis and possibly dies because he's in denial. He said he doesn't want us to be one of those families whose lives revolve around their kids' food allergies. I said this is the new normal for so many families now, unfortunately. It's not like when we were kids.

Anyway, full-blown Paleo is probably not in my future, unless I want to sneak around...
We might need food allergy marriage counseling!!

When I'm almost off prednisone, I'll determine if I need it to keep the DM in remission.

[Lesley]

According to the tests I have no thyroid issues, Tex. I am going to read the book and try to do this very strictly. I have to lose 10 pounds. I thought if I stopped eating oats, potatoes and chips I would lose weight. It's not happening.

[tex]

but that requires them to have a clue

That's a pretty tall order for a GI doc, when you're talking about food sensitivities.

I hope that she'll be able to pleasantly surprise you with her knowledge.

Tex

[tex]

I thought if I stopped eating oats, potatoes and chips I would lose weight. It's not happening.

That's a classic symptom of hypothyroidism — even though you eat less food, you can't lose weight.

Tex

[Leah]

Lesley, sometimes you can eat too FEW calories which will signal your body to HOLD ON TO ALL THE FAT IT HAS since it's in"starvation mode". I know you have a restrictive diet, so are you getting enough fruits and veggies in to warrant being Paleo? Our bodies do need carbs to function properly.( And you can get them from fruits and vegetables). It's the main energy source for almost all of our organs and tissue. It's a major stress on our systems when we don't have enough.
.....just a thought

Leah