cornbread

Thank you very much Rachel - that makes perfect sense. Very glad I don't have any IgE food allergies then!

So I suppose things like hayfever are still IgE in that they *are* immediate, even though they are not life-threatening. I wonder how accurate the IgE blood tests are? I can't understand why I came back negative for things like pollen, grasses and ragweed. Unless my 'allergies' are actually something else. ?? I'm suspicious because I never had them until the month I went gluten free.

Ok... This whole IgG vs IgE vs IgA thing is VERY confusing... I know that York's food allergy tests measure IgG. Enterolab's gluten, etc. tests measure IgA. I don't really understand the difference except that IgA is for life and IgE is probably not. But what about IgE?

I just did ImmuneTech's 'most common allergies' test, which measures IgE. The test said I was negative for all common allergens (pollens, mold, etc.). But I'm pretty damn sure I have environmental allergies... I go outside and I can feel the stuff getting into my lungs!

Also, the IgE for egg white was negative, whereas my IgG result was way positive.

What is the difference between IgE and IgG? Can anyone shed any light?

Thanks!

York took over a month to get my results to me. Now I've got them, the jury is still out on whether I think they are accurate... Cut out the food they said I reacted to and am waiting to see if I feel any different.

I'm sorry - I've calmed down now! I hope no one took offence. I certainly didn't mean any, I just get very protective of my Celiac sisters!

The point is though, when you're married, you share your lives and your home. You're supposed to look out for each other's wellbeing. If I knew that a miniscule amount of something I ate just cos I liked the taste of it could cause my loved one serious illness and discomfort, I would not think twice about doing without it, at least in our shared kitchen! It's akin to smoking around someone with lung cancer. It's just selfish and disrespectful. ESPECIALLY if he leaves a breadcrumb trail for you to clean up! I'm sorry - it's not my place I know - but that really gets my goat! You should not have to deal with that.

Shirley, have you tried Breads From Anna's gluten-free bread? It's incredibly good and similar to regular wholewheat bread - maybe your husband could switch to that. It's more expensive than wheat bread of course, and you have to make it yourself, but to cut down on a major source of kitchen contamination I would think it would be worth it. Plus if you bought a huge case the cost would be lower. Just a thought. I haven't got my husband to go gluten-free, but as he is doing low carb there aren't many crumbly gluten things in the house. He still has the gluten-filled low carb bars, but they are pretty easy to keep away from me. I would really love it if he would go gluten-free though, at least in the house. I have hinted by telling him how great it is that other people's spouses on the board have gone gluten-free, but he's not much of a one for picking up on hints! I will just have to make do with de-glutening the dog. He gets more kisses anyway!

Hello,

First of all, sorry you're going through this...

I used to have symptoms a lot like yours before I went gluten free. Massive waves of nausea but then nothing... I used to have to leave dinners, the movies, etc. convinced I was going to throw up. It would happens a few times a week - very often after eating but sometimes just out of nowhere, middle of the night, etc. Fun!

In your case, considering the family history, I would be really surprised if it wasn't celiac disease. I would suggest getting either a complete Celiac panel done, maybe seeing a GI specialist would be the way to go.

I do not fear death or hell because I have experienced brain fog.

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Ian, as usual, you speak the truth...

You can get the antibody test (and more) done in the comfort of your own home, via www.enterolab.com. All I ever seem to do is post links to Enterolab! but really, they are good and it's very simple. You get to see your own results with an explanation, and you can do what you want with the info.

how long after going gluten free should i notice a difference? should i also avoid dairy foods?  p.s i was recently tested for food allergies and it was negative.

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Hi Flash,

How long before you notice a difference totally depends on the individual - I felt a lot better within days, but for others it's weeks or even months. With luck you will feel some improvement quite soon, even if not a total 'fix'.

Also, I just got allergy tested for 96 foods, and they came back negative for most including gluten and casein, two things that I know I have a positive IgA reaction to. The reason for this is that food allergy screening looks for IgG antibodies, rather than IgA. It's a little complicated, but both types of antibodies act differently. The main poiint is that IgG-mediated allergies are often reversible over time whereas IgA intolerances (the type of gluten intolerance we are dealing with here) is for life.

Re: dairy (casein) - the casein protein is VERY similar to the gluten protein, so there is a high chance that having a problem with gluten means a problem with casein too. I developed a casein intolerance about 4 months after going gluten-free. My symptoms were identical to gluten ones. If you feel you're not better going gluten-free, definitely try casein-free too. But before any of that, I can't recommend the Enterolab tests highly enough (they screen for casein too). It will give you the information you need.

Hope that helps!

Tiffjake - Enterolab do IgA.

Raven - It was frightening to hear you say that. Often when I get glutened I will hallucinate flashing lights or that bugs are crawling on me, I can see them on my arms. One time I woke up and could 'see' a supersize (like, Japanese horror movie size) roach crawling down the bedroom wall towards my husband's head. I was screaming at him to look out! A few seconds later I realised I had hallucinated it, but I certainly wasn't asleep. The only reason I knew it wasn't real was the size of the bug. I can certainly imagine a link between gluten and schizophrenia.

Stefi, I get them at Whole Foods.

As the others have said, there are 'gluten sensitive' genes too. I would suggest a gene test through www.enterolab.com. They will tell you what the genes are and whether they are gluten sensitive ones. Also maybe get their stool test for gluten antibodies, if she's not been gluten free for too long. But regardless of an antibody result, the answer is in her reaction to a gluten-free diet. Even if it's not Celiac, it is clearly a gluten intolerance, and that can cause as much discomfort and as many health issues as classic villi-damaging Celiac. Gluten intolerance is gluten intolerance. To give someone the diagnosis of a disease *only* when it is at it's worst point (biopsy proven intestinal damage) is ridiculous! They don't do that for other diseases - you either have it or not. I think the whole gluten-free lifestyle would be much easier for us all if more people could get an official diagnosis of *something*. There is a public suspicion for self-diagnosed dietary restrictions which makes an already difficult lifestyle a lot harder than it needs to be.

I got prescribed Nasarel. I don't see it on the gluten-free drug list... Does anyone know if it's safe?

Without making it sound like fun, brain fog can feel quite similar to being drunk, or at least under sedation. Imagine being drunk but trying to do something complicated, and how frustrating it is that your brain and body won't cooperate with each other! And how you don't feel like you're really there - like if someone snapped their fingers they could wake you up and tell you you had been dreaming. I also find my speech can slur a little with brain fog, or my words will come out wrong. I also find it too much like hard work to have a conversation - I don't have the mental focus to put any feeling or volume into my voice. I also hear a ringing in my ears sometimes, like I can hear the silence. And I find that normal noises sound too loud normal lights seem too bright. It sucks!! The worst part about getting glutened (or caseined) for me is the knowledge that I have a week's worth of living in a bubble ahead of me. This usually goes hand in hand with chronic fatigue, but the times that I overcome that the brain fog still remains.

Hey Stefi,

The Organic Food Bars provide 6 or 7g, as well as lots of other goodies (Omega-3 Flax if you go for that bar, Active Greens if you prefer). 7g isn't all you need obviosuly, but it's about a quarter so it's a decent start. Plus the bars are delicious. I usually eat one a day.

Open Original Shared Link

Another vote for brain fog. It's the first sign that I've had gluten/casein (kicks in within 10 minutes), and it is the longest lasting - about 6 days. It really is incredibly debilitating. Before I knew about my gluten problem, I used to just tell people I had days where I felt 'underwater'.

I'm not sure if this is exactly what you're after, but I had a go at making my own 'raw' (unbaked) 'Organic Food Bar' (like the ones on sale under than very name). I just bought most of the same ingredients and had a go at it! Here's what I used:

1 cup almond butter

1.5 cups flax seed meal

1/4 cup cocoa

1/2 cup agave nectar

125g (one small tub) blueberries

1/4 cup water

I then just mixed everything together really well, laid it on a foil-lined tray and stuck it in the fridge. The texture was a bit messy, but it tasted GREAT - incredibly similar to the organic food bar (although they are more chewy and these were softer).

Anyway, I suppose if you just mix the ingredients together and let them 'set' you should do alright.

Hi Nancy,

You make an interesting point. I actually have 'the set' ... a DQ2 (celiac) and a DQ3 (gluten sensitivity - like a DQ1) gene. My mother has double DQ3's and my father has double DQ2's. My symptoms are a little of both, although most severely the non-gastric stuff. We should maybe start a poll, for those who know their gene types - what kind of symptoms do you have?

a ) mainly gastric

b ) mainly neurological

c ) a mix

d ) asymptomatic

Flash, what kind of tests did you have, can you remember? I would highly recommend testing with Enterolab (www.enterolab.com). They send you a kit and you send it back and then they email your results. Their test is very sensitive and only $99.

I have a relative with schizophrenia whom I have been trying to convince to take a gluten test, as we have multiple family members with gluten sensitivity/celiac.

By the way, I get aches all over if I have gluten or casein.

I created a post about this a while ago... I found that sublingual NADH is really helpful for fatigue/brain fog after I'm glutened. I pop 40mg (4 10mg tablets) as soon as possible, and then have one or two whenever I need a pick up. It's totally natural, you can't OD. You can buy it at health stores. Sublingual works best. There's a brand I get (ENADAlert) which is around $18 for 10x 10mg pills. I'm sure you can find it cheaper online, I just pick mine up at Whole Foods.

The thing is, some of us (me included) do not get any gastric symptoms. And to be honest, I think if people thought the food "just" made you throw up, it doesn't sound as serious as it is. That's where the manager saying "Oh, good thing you only ate a little..." came from - she associated the amount of food (a forkful) with the amount of illness I might suffer. She could simply not comprehend the severity and long-term effect that tiny forkful would have. I am STILL completely brain-fogged, exhausted and dizzy, 6 days since the incident. The symptoms should not be relevent to them, because then we're pretty much asking them to judge whether or not it's worth their time to be careful.

Gluten and casein both make me feel like hell - depressed, irritable, really angry, hostile, over emotional, weepy... If any of you guys know for sure you've not been glutened but still feel that way, I would seriously suggest getting tested for casein intolerance ($99 from enterolab.com). The protein looks and acts just like gluten. If you're gluten intolerant there's an 80% chances you'll be casein intolerant too.

Hi Teacher.

Sorry to hear that... the last thing you need right now is this.

YES - cross-contamination effects everyone. If you are less sensitive than others then you may not FEEL any reaction, but there will be a reaction going on inside your body. A miniscule amount of gluten (licking a stamp!) is enough to trigger a reaction that continues in your body for around a month. That is fact.

I have trouble getting my spouse to remember everything (wash hands before unloading dishwasher, etc.) but he's not unwilling, just forgetful/distracted. Still, I wish he took more interest in what I'm going through. He's sympathetic, but what I really need is for him to take an interest in understanding the condition. The in's and out's seem of no interest to him. I've bought books and asked him to read them to get a better understanding, but they just sit there unread. Oh well... At least he is sympathetic and any time he catches himself complaining about being tired, or it being hard to find food when he travels (he's doing low-carb), he suddenly remembers that it's *nothing* compared to my problem, and says so.

Anyway, good luck with educating your lesser half... But first and foremost, look after yourself and be safe. It's sometimes tempting (especially in the early stages) to try and fit in, maybe order what you *think* is gluten-free on the menu but not double-check with the staff, so as not to cause a fuss. I tell you what I've learned - it's not worth it! Make a fuss! Not only will you have less chance of getting sick, but if you downplay your condition at this critical point, when everyone around you is also learning about it, you will *never* get them to take you seriously.

And PS: Nice restaurants are the MOST likely to be able to meet your gluten-free needs. Their staff are usually more attentive and better trained than at diner-style places where the staff are rushed and underpaid and waiting to go home. I use this fact as an excuse to only ever be taken to expensive restaurants - it's for my safety!

But really, they have that thing on the plane where they say you can't sit in an exit row if you are "unwilling or unable to perform the tasks required of you..." If we had a card like that, we'd never get served! I guess that's one way to stay healthy...