cornbread

Hi Maureen,

Glad to hear you are on the right track... I have celiac disease/gluten intolerance and used to suffer from depression. I felt better by the day after going gluten-free. If I ever accidentally consume gluten (even a miniscule amount, like licking a stamp! ), I get a week's worth of illness, which for me is mainly neurological - brain fog, irritiability, chronic fatigue and depression. I know now that my 13 years of on-off depression (sometimes merely irritable or down, sometimes full blown what's-the-point) was down to how gluten reacts with my brain. This link is not new, and it infuriates me that my doctors were so quick to stick me on medication rather than find the underlying cause. My hat is off to you for taking action on your daughter's behalf. I think the fact that she is 'detoxing' means you will probably have VERY positive results with the gluten-free diet. Good luck and please let us know how you and her get on.

If you haven't already done so, I would suggest reading the following book:

Dangerous Grains - James Braly MD, Ron Hoggan MD.

It addresses a lot of the non-classic gluten intolerance symptoms.

Ok, I've answered my own question (thank you google!)

"Another issue [as well as contamination] is that patients may have a sensitivity to the protein portion of oats and develop intestinal inflammation and villous atrophy. This is very rare."

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Woo-hoo! I'm ordering me some oats!! Thanks for the heads up mamaw.

I LOVE oats! However... it worries me to read reports that say oats can be tolerated by *most* Celiacs.... What exactly does this mean? That some of us have a separate problem with oats, or that only some of us feel a gluten reaction from then?

Second vote for Han's! They rock! I like the chicken/apple and the chicken/spicy italian.

Urgh... this sucks so bad... I just figured out today that Claritin, which I have been taking daily since May, contains dairy. I became casein intolerant in early September (official DX in Nov, but symptoms from Aug). So this whole time I've been dosing myself up with casein daily. Arghh!!! The weird thing is, I haven't had 'caseined' symptoms (not the way I did when I had a tiny tiny mouthful of something cooked in butter - sick for 8 days straight), but I've clearly been doing myself damage nonetheless. Maybe this explains all these new 'niggles' (extra allergies, stomach ache after meals...) I feel like such a fool. Of course I made sure it was gluten-free, but by the time I went CF I was in such a Claritin every morning routine I just didn't think to check.

Have switched to Allegra. Onwards and upwards...

What confuses (and worries) me is those of us whose reactions last longer each time. When I first went gluten-free and got 'glutened' the first few times, I would have symtoms for 48 hours. I thought that sucked. Little did I know that the *next* time, it would be 3 days... Then 4 days, then 5. I seem skipped 6 and went straight to 7, and then this last time it was 8! Will it never end?!

My GI presscribed me with Miralax. I'm not going to fill the script until I know it's gluten-free/CF, but haven't come up with anything when I've searched online. Does anyone know?

Thanks!

Hi Cornbread ~ when I read the book I had the same reaction as you.  I don't have D... what is it talking about??!!  BUT, after starting the diet for a few days... I got D!  And lots of it!!  I think it is the bodys way of "cleaning out".  After the D went away, I started adding the foods that the book allows, and I have never felt better.  I have always had the constipation problem as well.  Not now.  No one on here can say definitely YES start the diet... it is hard and must be something you really want to do.  Good luck!!   

P.S. You may want to start after Thanksgiving!! 

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Thanks Kimberley - that's reassuring! To be honest, I am 99% grain free already, because rice, corn (well, ALL grains) cause me to be really bloated. The only big difference between the SCD and my diet right now is that I don't do any dairy, and the fruit and veg I eat is either raw (fruit) or steamed (veg). The big difference would be cooking the fruit etc., but I can see how that would help the stomach heal, ie: less work digesting.

How long did your SCD-induced D last?

Hi all,

I just bought and read Breaking The Viscious Cycle. The book strikes a presumption that one has chronic diarrhea! I (thankfully) do not. I bought the book because I suspect a leaky gut and thought the diet would help, but now I think it might be overkill for my situation. Has anyone undertaken the SCD without diarrhea? In fact, to be honest, my problems are at the other end of the spectrum - would the SCD help with that?

Oats are a no-no, yes yes. This is because they are produced/stored near gluten grains and get contaminated. I even tried Irish oats that were supposedly made in a factory with just oats, but I still had a reaction.

I REALLY like Envirokidz cereal. They have gluten-free cocoa pops (rice), corn pops and frosted flakes.

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If it's a casein free diet, then NO dairy is allowed. I know some lactose intolerant people are ok with yogurt, but casein (the milk protein) is different to lactose (the milk sugar) - lactose can be removed from milk, but casein can not. Sorry if that wasn't what you wanted to hear!

Hi Maggie,

After gluten the most common culprit is casein (the protein in dairy, whereas lactose is just the sugar in dairy). Have you done a casein intolerance test? You can do one at enterolab.com for $99. Casein gives me the EXACT same symptoms as gluten - a week's worth of hell, basically. Casein intolerance is a life-long thing like gluten, and casein can do the same damage as gluten (intestinal, neurological, etc.) My problems with soy, corn and rice are less dramatic, but still there. The casein protein is very similar structurally to gluten, and I think I read that 80% of gluten intolerant people are also casein intolerant (or become so after quitting gluten - this happened to me). Soy and corn are the 3rd and 4th culprits. I would look into casein first though.

I think for those of us who were sick - usually for years - celiac disease is very positive as it means finally being in control of our health. When I'm gluten-free, I feel more positive than I ever have. And even when I get glutened, I'm pretty good at staying positive because I know I'll feel fine again in a week.

The only times I'm negative about it, I'm not actually all "why me?" about having celiac disease, I'm actually usually pissed off at the attitude of people in the non-celiac world - waiters poisoning me just because they're too lazy to pay attention, friends and relatives upsetting me with ill thought out and ignorant remarks. I think it's fine to share these experiences with others on the board. When I read someone else's negative experience, sometimes it helps me because I've had the same one, or sometimes it helps just to know I can help them out by making a suggestion or just maybe saying "sorry, I know how you feel".

For those on the board who felt completely healthy but got diagnosed with celiac disease for example because a family member had celiac disease, then for them it's a shock and they probably feel like their world has ended and if they 'whine' about it here, the rest of us can convince them that it's not the end of the world. If they didn't type their 'complaint', we wouldn't be able to read it and help them with our replies. The whole board is about give and take. Helping others with our answers is as much a part of it as posting a question for others to help with.

Hi Maggie,

I have no problem with sugar (yet!), but after going gluten-free I developed problems with other foods - corn, rice, soy, potatoes... I don't get my usual glutened symptoms with them, instead I get a distended abdomen, headache, back/stomach ache, acne and (with soy only) some toilet issues. I have also tested for food allergies and was positive to egg, although I don't *feel* that it gives me problems. I also have stomach pains after most 'safe' foods I eat, as if my insides are just sore all over.

From what I've read, additional food sensitivities can be indicative of a leaky gut (caused by celiac disease), and once the gut is healed these extra, temporary sensitivities will go away. I also got my first ever environmental allergies right after going gluten-free.

I am getting tested for 'intestinal permeability' (aka leaky gut) next week. The test my doc is using is from Great Smokies Lab:

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You have to get a doctor to order it, but if you call the lab they will give you a list of doctors in your area that use their services.

If I find out I do have intestinal permeability, I can then take steps to heal it which I believe involves dietary changes (basically eating very simply and giving the gut chance to repair without extra stresses) plus enzymes, probiotics, l-glutamine, etc. I'm sure there's a little more to it than that, but that's what I've hired my Dr. for! (naturopath btw - my GI doc had never heard of leaky gut... ) Anyway, apparently the gut can heal if you treat it right, then you can begin reintroducing the foods that you became sensitive too.

Of course, if the permeability test is negative, it's back to the drawing board!

I saw this episode a couple weeks ago.

I dont want to spoil it for anyone but...the little boy has celiac disease. 

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I get Evo/Innova from the pet store. They won't have it at the supermarket and my vet stocks things like Science Diet which are grain loaded also.

One other thing that happened during the gluten challenge was that I woke up one morning and wasn't able to make a fist with my right hand until that afternoon. The strength just disappeared for a while although it did finally return.

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Wow - that reminded me that I used to have that EVERY morning for about 10 minutes upon waking up. I thought it was totally normal. Now I'm gluten-free I realise it's not! I had never attributed it to gluten. I couldn't even grab hold of a pen to write, there was just no strength at all in my hands. I know exactly how you feel!

Also, my mother has a paid of DQ1's and her tTG was positive. I have always been confused about this, but I guess it just proves that celiac or 'just' gluten intolerant, the damage is being done.

My gluten-free dog eats Evo / Innova. Evo is the dried stuff, it's totally grain free and high protein, low carb. Innova is the canned stuff and is gluten free but has corn I think. I also have my cats on the cat versions. It's really high quality stuff. I don't believe pets should be filled up with processed grains, how on earth would they eat that in the wild?

Yeah, you can get coconut butter. It's essentially coconut oil but solid. I use it as I can't have casein and soy makes me sick (plus I don't trust it!... )

I think RG's question pretty much meant, why bother with a biopsy? In his case, with positive bloodwork, all the biopsy could do is maybe rule Celiac in. If the biopsy was negative he could still have celiac disease, and based on the other tests, probably does.

I have the same question - my Dad just got his results back and had positive antibodies all around, plus double Celiac genes. He can't afford a biopsy - I'm urging him to just presume this is celiac disease (he's asymptomatic, but I'm not and I only have one celiac disease gene...)

Lauren - Thank you. I saw that post and replied to it re: brain fog, as that is my most severe symptom. I had it almost every day for 13 years before diagnosis. Seems astonishing now, but when you always feel like that you just think that's normal. I'm looking forward to reading your findings. The neurological aspect of gluten is fascinating to me.

Rachel - Yes, I was gene tested. I have one DQ2 (celiac) and one DQ3 (gluten sensitive) gene. Dad has double DQ2's, Mum has double DQ3's, so I didn't really stand a chance!

Like you, my symptoms are mainly neurological.

I'm glad to hear I'm not the only one who has the eye contact / conversation problems when glutened. It's one of the symptoms (along with irritability) that it seems hard for my family and friends to believe is really all because of gluten. They see the change in me but I think they find it impossible to comprehend how all that can come from licking a stamp.

Every time I'm glutened (or caseined in my case too), for the following week I get brain fog and neurological symptoms (sometimes even see bugs, flashing lights, etc. ), am very light and sound sensitive, am uncomfortable making eye contact, making conversations is a big struggle and when I do try to, words often come out wrong as if I'm drunk or verbally dyslexic.

This normally resolves when the glutening has worn off, but the last couple of times, I have noticed this lasting longer than other symptoms. I got caseined last Monday, felt sick until this Monday but have felt great since yesterday *except* I have been finding it difficult to think of the right word sometimes. I know that happens to us all every now and then, but for me not like this. The word I was looking for was "occur", ie: "it doesn't even occur to them" and I swear I could not think of that word! I knew what I wanted to say but I could not find the word. It was really scary. I was not tired and feeling great in every other way.

So here's my question - anyone else get this long-term, and am I being paranoid by thinking that every time I get glutened it is killing off some brain cells??!

I can only imagine how bad I would feel if I purposefully ate gluten. My last few 'glutenings' have been purely cross-contamination and have knocked me out for 7 days. If I ate a slice of pizza, surely I would just drop dead!

I was watching a TV ad last night for those new yogurt-dipped Cheerios. I said to my husband "Mmmm, poison coated poison!" That's really how gluten and casein foods look to me now. There is no way I'm gonna "cheat" because the desire for those foods is SO gone. I guess I should feel lucky that I'm not asymptomatic because I'm sure my appetite would overwhelm my brain every once in a while, especially after a little wine...

Please post again after you've tried eliminating your items, even if you don't find any related symptoms.  Maybe if enough people post their test results and findings, positive and negative,  we'll all better understand the meaning of these tests.

George

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Certainly will George. One full week so far so a little early to tell, but I did have a persistant rash on my back which started clearing up this week. Not sure yet whether to attribute that to being egg-free or just a coincidence. I'm going to stay egg-free for a full month and then eat them again for a week and see if anything happens.

Also another coincidence? I made chicken two days ago in the pan that I used to cook my breakfast eggs in, and about 45 mins later I was violently ill. Diarrhea, sweating all over (my t-shirt was soaked), shaking, incredibly pale and dizzy... After that 'attack' was over, I was completely fine. I'm having a problem attributing this to the egg pan though because less than a week previously I had eaten 2 or 3 every day and had no problem at all. Surely cutting them out for 5 days then reintroducing via a little cross-contamination wouldn't have such a dramatic effect?

FROM PEPSI www. PepsiCo.com November 13, 2005

Although high fructose corn syrup is derived from corn, the technology used in making this sweetener completely removes the protein fractions, leaving no residuals in the finished sweetener.

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Doesn't this statement just prove that Pepsi don't actually know what the hell gluten is?!