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Gluten Free Guerrillas

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Jackersbaby profile image
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Hi everyone I'm new here and I'm wondering are there many of you like me ?? Lol. I can't eat gluten - eggs - dairy - pork - spuds - and now tomatoes !! And now I can't ware clothes for more than a few hrs as I come out in big welts I'm also allergic to latex and some of those gels u would use for the likes of baby scans. My heads turned with it all. I've tried no washing powder all my jeans would be on a boil wash thinking it was just the powder but nope. I all so been battling depression for yrs and it's got worse which has brought on my OCD again. God if I was a dog I'd be put down

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Jackersbaby profile image
Jackersbaby
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Don't feel alone. I just found out I cannot eat nightshades on top of gluten, oats, corn, buckwheat (probably should not eat any grain) and eggs. I break out in horrible rash from the sun, as well as latex. I am beginning to think my genetic makeup comes from another planet.

Hil101 profile image
Hil101

Sorry you are so unwell. I've said it before here but I think eggs contain a lot of gluten due to chickens being fed on wheat and barley. I find that key things that help me when my body's down and has become over-reactive are: keeping meals simple, a couple of items not loads of different vegetables which maximise stress on the gut. Also taking zinc to boost the body - I've been told I should take zinc for life, on its own with a meal as it isn't absorbed properly in a multi-vit tablet. It seems to help, as does taking a digestive enzyme including gluten-digesting enzymes with a meal. I can eat potatoes, tomatoes and peppers - but if I eat them all together, I'm awake half the night with discomfort. They are nightshades and contain a chemical that upsets sensitive people - it's worth looking it up. Cooked tomato skins may be the worst part. I think that the gut damage done by coeliac disease causes these over-sensitivities and if we can assist the gut by keeping irritants down, then the over-sensitivity recedes. That's how my body is, anyway. Sorry for the essay and I hope you feel better soon.

freelancer profile image
freelancer in reply to Hil101

That's interesting about the cooked tomatoes - I sometimes do a ratatouille type meal that makes me feel a bit weird and I don't get on that well with bolognaise sauce either these days, but I'm fine with tomatoes in salads and seem to have no problem with potatoes.

Hil101 profile image
Hil101 in reply to freelancer

My partner told me that you mustn't eat cooked tomato skins because they pierce the lining of the stomach!!! After I'd stopped laughing, I realised that these old wives' tales are often grounded in careful observation of symptoms.

Penel profile image
Penel

Hi Jackersbaby

You are not alone. Many people on this site have problems with more than gluten, and dairy problems are very common. Once gluten has damaged your guts it can leave you open to other problems (have a look for gut permeability, or leaky gut). I can only tolerate a few spuds or tomatoes at a time, dairy was a problem for some time but I am now ok with lower lactose dairy products.

Have you had a diagnosis from your doctor, or any advice from a dietician?

You may find that you need to look at a fairly radical change in food for a while, while your guts heal. The Paleo diet works well for some people, but once you have a problem with several foods/sensitivities it may be worth looking at the Autoimmune Protocol diet.

thepaleomom.com/autoimmunit...

This post from a few days ago may be helpful.

healthunlocked.com/glutenfr...

Life with an autoimmune disorder can often seem like a battle with the rest of the world. This site has a lot of good advice and support, so hang on in there. Good luck.

Daisy77 profile image
Daisy77 in reply to Penel

Have you tried organic free range eggs? A friend of mine keeps chickens and they prefer to pick around in the garden rather than eat the purchased chicken food?

Also, I heard of a man who was allergic to blue dye so couldn't wear any blue clothing. That one came up on my tests, but I don't wear a lot of blue anyway.

Hil101 profile image
Hil101 in reply to Daisy77

I spent quite a bit of time looking into chicken feed and contacting producers re what their birds were fed on. Often the organic ones have more grain in their diets, not less. The least glutenous chicken meat I've found is Waitrose Essentials as it's predominantly maize fed. I noticed the small print re feed on the label after I'd observed that their chicken meat gave me less discomfort compared with yummy organic ones! An allergy doctor told me that when chickens were frequently fed on fish meal, a lot of people who were allergic to fish became allergic to chicken too. I am occasionally affected by farmed salmon and looked up salmon food only to find that it contained wheat. We really are bombarded with the stuff.

upnabout profile image
upnabout

It can take a long time for the gut to heal after giving up foods. At one stage I was reacting to everything - even water. When I first gave up gluten it took months and months for my gut to settle down. I reacted to things that I can now eat again, but we're talking years later. The tiniest bit of cross contamination still sets me off for a couple of weeks. I also still have inexplicable bouts of gut problems, however careful I am.

You might want to look into the FODMAP elimination diet, even if it just helps you find things that you can eat.

A lot of people also have multiple allergies/reactions and it can be difficult to pin down exactly what is setting you off. There could be something in any of the products you use - toothpaste, deodorant, washing powder, fabric conditioner etc. I once had a shirt that I reacted to - it must have been something in the dye! There's no simple solution, just a process of elimination.

freelancer profile image
freelancer

That sounds horrendous. It probably sounds obvious but the one thing I really wish I'd done in retrospect was to work out a few safe (and healthy) meals and just eat them on rotation so that you're not endlessly discovering new problems and feeling like the world is against you.

urbangirl profile image
urbangirl

You certainly aren't alone. I never cease to be amazed at what happens to me when I eat certain foods that I thought were okay. The latest example being yesterday. I ate some celariac and spinach* which I have eaten on numerous occasions before but this made me ill (won't go into the symptoms) but it was quite difficult as I had to go out to a meeting, felt really uncomfortable and insecure wondering what might happen next. When I got home I did a bit of research and felt so confused about all the different problems that could be affecting me such as IBS, lactose intolerance, fructose malabsorption etc etc. I also try to keep on a low-carb diet to keep my weight and glucose levels down. And just to confuse matters even more foods I identified that gave me problems with a FODMAPS elimination diet I can now eat, such as nectarines and mangoes. However, FODMAPS was good to do with the help of a dietician as it has given me a baseline to work from. I definitely know what to avoid and things that can be dodgy. Also ... I have said this before, I am a very fussy eater so I am always looking at recipes that don't look very nice, (for example I keep looking at paleo diets and cannot find anything that appeals to me or that I can eat) consequently I stick to the same boring food.

I wish I could talk to a health professional about all these things and get advice. I did get to see a dietician but once she had supervised the FODMAPS that was it. My GP is obviously very busy and I am not sure she is the appropriate person. So in the meantime I muddle on and although the menus we eat are usually repetitive they are good healthy foods.

Maybe it would be good for you to see if you could be referred to a dietician to do an elimination diet -FODMAPS and have allergy tests for the other products that you react to. It is a hassle having to keep going to the doctors for referrals and blood tests but worth it. I hope you don't get too depressed about things and find some solutions soon.

Best wishes

* Apparently according to blood tests done in March my iron content is on the high side. I put it down to the amount of spinach I ate.

Hi Jackersbaby, well I'm not surprised that you feel depressed with all this going on so poor you. Many of us have other issues other than CD and caused by CD so you're not alone.

The foods that you have issues with are also interesting and potatoes and tomatoes are members of the night shade family, eggs and dairy is also common amongst coeliac and pork is interesting, pork allergy is triggered by the protein in pork I can't remember what it is but like gluten and dairy it is the protein that causes the problems.

What may interest you is vitamin A helps to boost our immune system and a good source is sweet potato which's not related to ordinary potatoes so you should be OK with them another good source of vitamin A is carrots. And another food group worth looking into is flavonoids as flavonoids naturally help our bodies fight inflammation. RED and green vegetables are high in flavonoids which again includes carrots. So I would try and eat as many foods that are high in flavonoids and vitamin A and see if these improve how you feel.

Another thing to bear in mind is if you're having issues with gluten and your villi is damaged then you're going to have issues with other foods like dairy so I'd consider a bland but nutritious diet which's easy to digest and you might want to consider seeing a nutritionalist about an elimination diet.

I laughed at your last comment that if you were a dog you'd be put down as a few years ago my lady friend moved in with me and said how lucky I was and I said I had so many health issues that if I were a dog they'd take me out the back and shoot me! And she said you always rise above these things and I still think that you're lucky and I agreed with her.

So you can do it and one thing you have to do is look at what you can eat and what you can do and focus on these things rather dwell on the negative.

And good luck and you're not alone.

spider profile image
spider

hey there! I suffered basically my whole life. im 36. in my 20s things got really bad though. horribly excruciatingly painful periods so ridiculously painful I can only compare it to the scene from resivior dogs when tim roth gets shot in the gut. heartburn diahrea constipation OCD depression severe skin rashes cancker sores anxiety painful joints like the list is so long I cant even think of them all. but thru the years with the "elimination diet" (in addition to taking out gluten & dairy) I found different foods fuck me up in different ways . I basically cant have ANYTHING BUT CHICKEN RICE WATERED DOWN OJ AND THANK GOD COFFEE WITH SUGAR AND ALMOND MILK. it may sound crazy but I cant even eat fruits or veggiies(unless I put them thru a juicer) cause the fiber constipates me for long long periods of time . here is my advice : every gluten intolerant person is different. (and remember you don't have to have celiacs disease to be intolerant to gluten, gluten sscrews with every living thing that ingests it including dogs and cats and everything esle. it is not supposed to be eaten---period!) because gluten does damage to the intestine you WILL have problems with other things. the other things you cant digest today may be okay for you in a few years when you give your gut a chance to heal. so just because something says gluten free does not mean you will be able to tolerate it. ive been gluten free for like 10 years and within the past 2 years I accidentally 'overdosed' on iodized table salt. ive had a rash ON MY FACE FOR THE LAST YEAR AND BELIEVE ME IT IS DEVASTATING! (people with the rash associated with celiacs disease cannot have too much iodine. and it sounds to me like you have DERMATITIS HERPETIFORIS like me) oh and by the way --not all celiacs get DH but anyone who has DH automatically has celiacs. you can get a skin biopsy of the rash instead of a colonoscopy for a positive diagnosis) im probably not making much sense right now cause its like 1am and im tired. but if you need me to clear up any of this info write me back. I know a ton of shit and ive been brushed aside by asshole doctors my entire life. every doctor ive ever seen told me I was nuts, I even went to the celiac specialist in new York city (who is supposed to be the best) and they had no clue about the correlation btwn iodine and the dermatitis herpetiforis! they told me "I must be getting gluten somewhere" well I ONLY EAT WHAT I PREPARE IN MY OWN STERILE KITCHEN AND I DONT EAT OUT. EVEN MY PETS ARE ON A GLUTEN FREE REGIME SO WHEN I SMOTHER THEM WITH KISSES I DONT GET SIGK. my shampoo soap and lipstick are all gluten free and I don kiss or go down on my hubby unless he "scrubs up" first. so you can only imagine my frustration! I hope you can make sense of my writing . good luck to you. and the rash thing is definitely coming from inside ( unless you are using gluten soaps or detergents) if you are gluten free and still getting a rash check your iodine intake. table salt, seafood seaweed egglands best eggs strawberries potatoes and red dye #40 used in candy and other shit are all high n iodine. and almost all forms of medicine in pill form has gluten so don't take anything. gotta go now. write back If you have any questions. p,s after being gluten free all my symptoms disappeared including ocd. and believe me when I tell you I was so sick It ruined my life. after college I could not work . I just started working last year after 10 years of my life being destroyed by illness! keep ur head up it will get better. it takes many many months before you start seeing improvements. but you will get better. I promise!

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