Overwhelmed- What To Do Next?

[Goddessheart]

Hi,

Sorry to jump in asking for help but I am hoping you have some advice for me as I am feeling quite overwhelmed and lost dealing with my health issues at the moment.

A little background- I was sick from gluten my whole life, looking back, but I didn't know why I was feeling worse and worse. Until 7 years ago when I got pregnant with my son and suddenly all my symptoms got worse- joint pain, exhaustion, racing jumping heart, hypoglycemia, crazy weight gain (over 100lbs in 3 years), brain fog, clumsiness, digestive problems ahem, 24 hr a day acid reflux, 24 hr a day wheezing despite salbutamol 4 times a day, blood blister-like ulcers in my mouth, insomnia, restless legs, annovulatory cycles etc etc. I went wheat free and then gluten free and it was amazing. I lost 60lbs, symptoms nearly completely went. I thought I had found my answer at last. I have not been diagnosed celiac, my doctor didn't consider that an option, probably because of the huge weight gain, although I had many other tests for arthritis, autoimmune, thyroid and so on, which all came back normal. I didn't pursue celiac testing once I had gone gluten free because the difference was so astounding I had no doubt that I needed to be gluten free.

Fast forward 3 years to now... since then I have found I also react to corn and gluten free oats and I suspect casein too though I am addicted to cheese and ice cream, aaargh! I had some residual joint soreness , tiredness and started to gain weight again so I tried a paleo diet thinking going off all grains would help. Amazing- *no* joint pain, my yoga teacher was amazed when I told her the sore shoulders I'd had the whole time she's known me had gone. But after 9 months of low carb paleo I was getting more and more depressed and fatigued and I realised low carb wasn't working for me.

So I added back in sweet potatoes, potatoes and white rice, as those are the carbs that the paleo commuity considers least likely to be an issue. Straight away I felt less depressed and more energetic. After a couple of weeks of eating those things daily I had the worst joint soreness I've ever had and also was having daily bouts of mild wheeziness. Potatoes? I am wondering if I have a nightshade sensitivity as it doesn't seem likely that white rice would cause such severe symptoms. I am 10 days into being potato free, waiting to see what happens. But how can I live without tomatoes, aubergine and peppers (yes I reeeeaally love them which should probably tell me something... maybe I should just stop eating everything I really like lol)!! I haven't wheezed for a few days so I think maybe it is working, just need to hang on long enough for the joint pain to have time to resolve.

I read about oxalates in some old posts here and wondered if that might be an issue for me too. I have three fibromas on my arms which have developed over the last few years.

I have been doing lots of gut healing stuff- bone broth, glutamine, probiotics, kefir and ferments and so on.

I've been struggling with my health for over 10 years and am starting to get really down about it after working so hard for so long and here I am, have regained most of the weight I lost, sore all over, exhausted and so on. I know I should go dairy free and sugar free (sugar also contributes to joint issues, headaches, tiredness) but am not having success with that at the moment.

Does trying going off potatoes sound like the best thing for me to try next? Then if that works try nightshade free? or would it be better to start from scratch with an elimination diet? I'm a bit wary of that as I already know if I don't get plenty of protein, some carbs etc at every meal I start to feel more tired and low, so that could make a restricted diet difficult and it'd be hard to identify reactions if I feel rubbish anyway!

Thanks very much for your help.

[WinterSong]

Hi. So sorry you're having such a hard time. Nightshade free is worth a try, but if you think you're casein intolerant you should look at that, too. Kefir I've heard is very good for digestion, but it is also a dairy product. Is that bothering you?

Best of luck!

[Goddessheart]

Hi. So sorry you're having such a hard time. Nightshade free is worth a try, but if you think you're casein intolerant you should look at that, too. Kefir I've heard is very good for digestion, but it is also a dairy product. Is that bothering you?

Best of luck!

Thanks very much. I think you're right, I should really stick to dairy free as well. I should have said it's water kefir, not dairy.

I'm also wondering if there could be some cross contamination going on. We're not a gluten free household though we use separate pans, utensils for food prep etc. With 6 in the family it's just not feasible financially to all go gluten free at the moment. The dishwasher is my biggest concern. I wonder if I should have my own plates etc and wash them by hand. But even then if we use the same dishcloth...

I've been reading about contamination of gluten free products as well. I eat most homecooked wholefoods but have found gluten-type grains in bags of gluten free- I found 2 grains of what looked like wheat in a bag of millet once, and in a bag of gluten free buckwheat flakes from a brand called "Allergycare" I found a few rolled wheat or similar grains mixed in. When I contacted the store they said they'd send me a replacement bag... got to be kidding, right?!! I get the feeling the only way is to not eat grains, but then I am really stuck for carbs if I can't eat potatoes either. I react to gluten free oats as well.

Introduced some gluten free rice and buckwheat cereal yesterday, as I need other carbs I can eat if I'm off potatoes. I now have a hugely bloated, tight stomach and look about 7 months pregnant (a familiar look from my last 3 years on gluten). Ugh!

I am starting to think what I need to do is go to a nightshade free paleo diet (no grains, dairy) and see if the symptoms go, and if they do try reintroducing things one at a time (and one brand at a time in case of cc, especially since I react to gluten free oats too- my rice flakes come from a company that does gluten free oat flakes as well, for example)

Though having read around online, maybe it could be Rice Dream I had on the cereal? I chose that brand rather than Provamel as Provamel has maltodextrin and I am very sensitive to corn. The only other milk replacement I can get (except soy which I don't so) is Ecomil almond milk but that has corn maltodextrin.

[TummyTrubble]

I'm new here but have a random thought. Have you been tested for Fructose Malabsorption?

I have FM and have issues with things containing brown rice (like your Rice Dream). I also have issues with corn (maltodextrin). And, although I'm not sure, I think water Kefir also has fructose.

Open Original Shared Link

Not sure how reputable that link is, but just some reading I was doing.

Fructose makes me very sick, very fast. The worst symptoms are in the first couple of days, but the next couple of days I blow up like a balloon with bloat - it's just awful. I have 3 different sizes of jeans in my closet so I can dress depending on the day...depending on how bloated I am. Ugh.

If you're still having issues and you can't pinpoint it, if you haven't looked into fructose, it might be worth giving it a try. Best of luck to you.

[alex11602]

I have read on here that Rice Dream is manufactured with barley so is not in fact gluten free. I hope that you can figure out what is bothering you soon.

[Marilyn R]

I've never become bloated from RiceDream milk, but my primary issues are neuro and digestive. I gave up my rice milk. And I've recently given up legumes and I'm feeling so much better. I still get carbs from root veggies.

Eventually I may try adding things back. I still seem low on energy, but I'm functioning better.

Good luck! It's a tough road figuring all of this out. I hope you find an answer.

[Goddessheart]

Thanks for your comments. I think it was the Rice Dream as I ate the cereal with apple juice and was okay. I am still having joint soreness even though I've been off potatoes for a while so I am going to take out rice as well and just use sweet potatoes and root veggies for carbs, and see if that sorts it. I don't think fructose is an issue as I don't have any problem with fruit.

[T.H.]

- One issue that might be exacerbating things, at least, is the oat sensitivity you mentioned. What brand of rice do you use? Lundberg rice, one of the only ones I know that claims gluten free status here in the USA, grows oats as one of it's cover crops for the rice.

I know a few oat sensitive celiacs who feel unwell after they eat this rice, and that is the assumed cause. I know it makes me feel terrible as an oat sensitive, myself.

Also, Bob's Red Mill processes its gluten free oats in its gluten free facility, and many oat sensitive celiacs I know get sick when they eat Bob's Red Mill, too, and again, the oats are the assumed cause.

The oat sensitivity seems something that can be a big 'whammy,' as it were, because the majority of gluten free products are not being careful with preventing cross-contamination of gluten-free oats.

- potatoes - do you buy organic? Potatoes made the top list this year for produce with the highest pesticide loads (in the USA, anyway). Perhaps you have an issue with pesticides as opposed to nightshades? (one can hope, especially if you like potatoes!) Tomatoes and peppers also tend to have a lot done to them, with gases, or waxes, or sprays, etc... Have you ever gone to a farmers market and tried out some untreated potatoes/tomatoes, to see how they do for a while? Might be worth a shopping trip or two. :-)

- Also, with any of the grains, have you ever seen this study? It might explain a few things, too:

Open Original Shared Link

- How sensitive are you to corn? Have you ever gone to a corn allergy site like this one ( Open Original Shared Link ) to double check that you are avoiding it all, if you are very sensitive?

When found out I was having corn issues (although mine seems to be sensitivity to gluten cc in corn. We're checking), one thing that made the biggest difference for me was changing my salt. I went from a corn-contaminated iodized salt (all idodized salt has a corn derivative to stabilize the iodine) to a sea salt that had no corn contaminants in it. I really did notice a change on that one. Avoiding citric acid helped as well (also can be corn contaminated).

- And with the probiotics, glucosamine, etc... - have you ever called up the companies and asked them not only if they are gluten free, but if they TEST for gluten? And if they test, what was the ppm detection level of the test?

A lot of companies don't test their products for gluten, even when they are calling them gluten free. :-( And even if I didn't need to know the answer, I still would ask the ppm detection level test question, because sometimes, they'll say that yes, they test. Of course they test. They are sure they test.

But they usually have to go talk to someone to find out what the detection level of the test is. And more than once, I've had someone get back to me saying, "oh, it looks like I was mistaken. We don't test for gluten. But none of our ingredients contain gluten so we're sure we're still completely gluten free."

So one of your supplements might be an issue - perhaps they changed a supplier or an ingredient so they are not as good as they were before, even. Also, I would say it's almost impossible that they don't contain corn. That has been a huge issue for me. I have had to drop all my supplements because they all had corn or corn derivatives in them, and until I got rid of it all, I had a lot of joint pain.

- With re: to elimination diet type of stuff, that's such a hard call. I can honestly say I think an elmination diet played a big part in my getting better, although I was pretty much fasting for a few days because I felt so bad. Thought i had a tummy flu!

Then I added things in one at a time, kept a journal, and some things became clear really quickly. So, it can be useful. It can help to, well, unmuddy the waters, as it were? The more plain and simply you can keep your diet, the less likely something weird will alter the result.

Some of the things that slipped by for a while once I went off the elimination diet:

oils - I used many at first, that I thought were gluten free, and turned out that wheat germ oil was processed on the same line (spectrum brand).

salt - as I mentioned

coatings - casein or soy are added to wax coatings on some fruits, like citrus, apples, and pears

pesticides - some of them that seem to be commonly used on some produce now give me raging headaches. Some seem to give joint pain, too. Trying produce from organic vs. non-organic sources, and especially trying some small organic farms from, say, a farmers market can help you tell whether you're getting some sort of cc on produce, or whether it's the produce itself that bothers you

meats - where they were processed, like at the butcher counter when they were also flour-coating other meats for the day. Or ground meat that shared a grinder with wheat-containing sausage.

Wishing you the best of luck! Hopefully you'll find the root cause soon and so can get on with things in a healthier state!

[mmm1017]

I recently had a saliva test because I had suffered from all of those same symptoms for years! My doc said I tested positive for the gliadin antibody. He said I had a severe intolerance to gliadin (found in all grains?) and that it was not just gluten. He told me I was done with grains, corn too. Corn is NOT a vegetable, it's a grain. Good luck:)

[Goddessheart]

Thanks, and yes I do react to corn quite strongly, as well as oats. It has to be something in the rice, potatoes or sweet potatoes as I was pain free when I was doing low carb paleo and it came back when I added those 3 foods in.

I've taken rice out as well as potatoes now so in a couple of weeks will see if it's eased. I did think of cross contamination with the rice, when I went LC paleo I was thinking that any grain can be contaminated, and I've had experiences of finding wheat-like grains in gluten free grains as I mentioned above.

So at the moment my only carbs are sweet potatoes which isn't really workable long term but I can manage for now, at least I can get two different types. I can't get yams or anything like that as I'm in the UK and not near any ethnic grocers or anything like that.

My joint pain is a lot less bad than when I was on gluten, I don't have that awful deep bone aching feeling, but I would be nice to get rid of it, especially the shoulder soreness as it affects my sleep.

[Goddessheart]

I just wanted to update and I say I think I have found out what is at the root of my problems. It's not multiple food intolerances so much as I am reacting to starch itself. I think I have a variant form of ankylosing spondylitis. Another disease like celiac that's hard to get diagnosed with. It's a form of arthritis but doesn't show up with the standard blood tests. The definative diagnosis is bone changes/ joint fusion seen on xray or mri, but I\'d rather not wait till it gets that bad before taking action (similar to not getting diagnosed celiac until villi damage has occurred isn't it). A low starch diet helps, which is why I got better when I was on low carb paleo, and then had a flare up when I reintroduced some gluten free starches.

Here are a couple of links in case I can help anyone else who passes through here:

Open Original Shared Link

Open Original Shared Link

There is a book too Open Original Shared Link

I am willing to bet that gut damage from gluten contributes to the situation as well. It ios very interesting that author of the book wen toff grains and was symptom free for 2 years, but then went downhill again and had to take out all starches. That closely mirrors my experience of taking all gluten grains out and being okay for about 18 months but then symptoms gradually creeping back again.

So I am going back on a low starch diet and hopefully I will feel okay again shortly. Fingers crossed!