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Hello - I am just looking for support really . I had a fantastic experience doing a Whole30 in August.

 

Currently - because of a separate medical issue - I am doing a 'gluten challenge' - eating gluten (for the first time in seven years) - in advance of a blood test for celiac disease. My doctor wants to test me for it and the test is unlikely to be positive if I am avoiding gluten. 

 

I cannot describe how bad I feel. Symptoms from mood swings, to stomach problems, to severe sinus pain. I feel like I'm poisoning myself. Worst of all is the constant hunger from eating so many carbs. I hate it, but I do want the diagnosis.

 

If anyone has been through this or has any suggestions for making it easier please let me know. 

 

I can't wait to sort myself out with another Whole 30 when this thing is over.

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You have my complete sympathies!

 

I had to do the same thing and actually got so sick i could not finish the challenge. I have chronic sinus problems so it was horrible anyway, but when heart palpitations got to a scary point, I pulled the plug. On the plus side I now have absolutely zero temptation to eat gluten, I'd be happy to never see it again :D

 

A Whole30 afterwards will make you feel a lot better. My digestion went all wonky afterwards and komboucha helped me get back on track.

Try and make note of the symptoms as it goes on, as these may help you later in identifying reactions.
How long do you need to do it for?

 

Prior to the challenge, I tested as not positive to gluten antibodies by blood. I don't know whether I'm coeliac or just gluten intolerant, but the inflammation, sinus reactions, stomach noisiness is a clear signal my body does not like it at all. Ultimately my GP advised that the outcome of the test either way was still me avoiding gluten, positive coeliac test just lets you know more detail, but he also said many people do not test positive who are, because the test isn't perfect.

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Thanks so much.

 

I only have to do it for two weeks - seems short compared with recommendations I have read online, but to be honest I'm struggling on day 6 - I can't imagine going for any longer than two weeks anyway so I'll take my chances. 

 

I am definitely making note of symptoms - I've had heart palpitations but I thought I was just (coincidentally) stressed - is that a common symptom?!

 

Cutting out as much sugar and dairy as possible to try to make things a little less uncomfortable for myself. 

 

The worst and most confusing symptom is that eating gluten gives me HUGE cravings several hours later and all I want to eat is more gluten. I don't know if it's physical or if it's because I feel I've been deprived of the 'pleasures' of wheat-eating for so many years. But it feels so grim when I do eat it. The loss of concentration/foggyheadedness is also AWFUL and very hard to explain to people. 

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I was told I was having a panic attack, it felt more like a heart attack and I didn't think actually *having* one would make me any healthier ;) I did some checking and there's a scary number of people who report their "panic attacks" have been "cured" after cutting out wheat. Prior to that event I'd never had any kind of anxiety or panic attack and it occurred 8 days in to the challenge and went away as soon as I stopped.
 

I had a few odd ones here and there, but when it got scary my blood felt funny, like my pressure was all wrong and my heart wasn't working right, pounding and thumping nonstop and offbeat and I was really dizzy. Stopped eating the wheat, much better in <24 hours, but severe inflammation lasted for weeks afterwards. Body was NOT happy.

 

I found the dairy + gluten made it much much worse. Gluten + dairy + sugar/heavy carbs worse again. Dairy in spring seems to be worse too.

 

Yep, the brain fog is terrible, almost feels like brain damage if you haven't experienced it for a long time and it comes back in full force, like you no longer have full control over your brain. If you have it all the time, you notice it less, but if it's been awhile, it feels very much like malfunction.

All carbs mess with my blood sugar (I'm not diabetic but my fasting blood sugar is erratic) and some make me very hungry, but I have found my appetite has dropped a lot living without wheat, even compared to low carb prior to that. I do wonder if the body knows that eating it regularly dulls the impact-pain of a sudden dose, and so seeks to "even out" the damage if you start eating it again.

I also get a reaction to corn as well, not as strong as gluten, but I can't ignore the instant response from my sinuses. I now avoid anything that's a prolamin as these seem to be the things that my body really does not like.
http://en.wikipedia.org/wiki/Prolamin

Rice is the best of the grains. I don't feel specifically worse when I eat it, but if I cut it out altogether I just feel "better". I do better with lower carbs and best ketogenic though.

If you're enjoying it, have your favourites, you may never want to again after it's over. I don't ever want any "treats" or whatever now, there's just zero appeal. When I see lots of wheaty things my brain seems to register more of a warning now (alarm bells) rather than an "oohh, that might be nice". Even if I forced myself to eat them now, I don't think I could enjoy any of those things again.

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Well it hasn't gone that far but I just feel wrong. I suppose it's nuts to continue knowing the damage I'm doing but now I've put in this much time I really want the confirmation that I have this thing. I suppose the symptoms should be confirmation enough. 

 

Hoping two weeks isn't going to throw me completely off track. I've committed to beginning a Whole56 on Nov 4th taking me through to New Year's Eve to address whatever mess I am in eight days from now. 

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Surely you've got your positive diagnosis? Sounds like you don't need a test result to tell you not to eat gluten!

I think gluten and dairy can cause cravings from both opioid-like substances in them and also they can activate your body's opioid system from the inflammation they cause. Opioids (like heroin) are highly addictive and do you keep going back....that's just what I read somewhere anyway.

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A few reasons I want the diagnosis (or at least to try to get it - it's not guaranteed, the tests aren't perfect):

 

- I have never had a doctor even take interest in the possibility that I'm celiac before - I self-diagnosed my gluten allergy seven years ago because my GP's offered solution to the persistent rash on my face (which I intuitively knew came from something I was eating) was "moisturise with vaseline" (honestly). To get the offer of a test from an NHS GP feels like a golden ticket to some medical attention which I should take seriously. Even if the blood test for antibodies is inconclusive, my diary of symptoms gives the doc something to work with and avoids any suspicions of hypochondria

 

- I am currently suffering with daily stomach/gut issues which I would like investigated and which no amount of sticking to a good diet has completely cured. The celiac test is part of a round of tests my doctor is conducting to check this out and it will help her to decide if I need tests for the kind of things celiac can cause (long-term intestinal damage etc)

 

- People ask 'Are you celiac, or just intolerant' and though it shouldn't matter too much what they think, it's always been annoying to me to have to say 'I don't know' - so, now I'll be able to say either, 'yes' or 'I don't know, but when I tested it this is what happened'

 

- I gave up gluten and my symptoms went away, and I never went back. It's interesting to take this one  chance to see what happens when I do try eating it over time. THe most interesting thing is what praxisproject has mentioned - the evening-out of symptoms, the way the brain fog feels appalling at first and then starts to seem normal, you learn to work through it etc.

 

I'm halfway through now and my jeans are too tight, I have mouth ulcers, my lymph nodes are swollen and I'm extremely mucousy, I've got a constant tight feeling around my eyes and I feel intensely stupid and negative in the three-four hours after consuming gluten, like I can't think properly. For me, it's proof, but I guess for a doctor it could be down to any number of things and another week of recording symptoms, then recording them again when I'm off the gluten, plus whatever blood results I get, will give them the kind of picture they need to draw any medical conclusion. 

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I have probably had celiac my whole life. I've always had digestive issues, even as a kid. I've just put up with it. 2 years ago, my husband was the one who wanted to try to go gluten free. I went along. I couldn't believe the difference. Not eating gluten resolved many of my digestive problems. (eliminating FODMAPS took care of the rest). I never bothered to get a diagnosis. I had some issues last year (before I gave up FODMAPS) and they tested me and of course it was negative because I hadn't had gluten for months, but a biopsy showed some intestinal damage.

 

I would just be prepared to be disappointed by traditional doctors. I was told to eat a high carb, low fat diet and take acid reducers. Well I'm doing the exact opposite. Unfortunately traditional medicine has not evolved to include diet as a problem (except to tell us that eating meat and fat will give us heart attacks). If the doctor can't prescribe a pill or do a procedure, they really don't want to get involved.

 

The best test for me is to try reintroducing gluten. I couldn't turn down a piece of fresh baked apple bread 2 weeks ago. But boy, did I pay for it. I really don't care what the label is. If something bothers me that much, I'm not eating it.

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Yeah. I'll post here once I see what they say. Maybe they'll just take my word for it - that it gives me stomach aches every time and I haven't had it except accidentally since February...

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From my understanding, the only treatment you get as a coeliac is the recommendation to avoid eating gluten, which is the same for gluten intolerant folk.

 

One thing I wish I'd done was have some blood taken while I was that sick, for comparison to the gluten-free me.

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Praxisproject did you experience swelling when you did your gluten challenge?

three days left of the two weeks and I feel very swollen all over, making my joints achey and my skin painful to touch. It's so wrong, I can't wait to freak my doctor out with my symptom diary...

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Yes, huge! Inflammation took a very long time to subside, even when all other symptoms were gone. I quite literally can add up to 10 kilos in inflammation (I'm obese), although it varied across the days. It's actually one of the primary ways I identify being "glutened" now, the swelling is pretty severe. My doctor doesn't believe it changes my weight so much, but people who see me regularly do, they can see it overnight.

 

Joints ache

Teeth hurt (they're all being squished up with the swelling)

Skin sensitive or is dry

Sinus flare up

Eyes go a bit funny (swelling around the eye)

Feet swell up, I tend to wear an old loose pair of shoes

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Well - I called my doc about the swelling and he said to STOP the gluten challenge and get the blood test early. Huge relief. All of those symptoms you list are familiar - gums swollen. Joint pain and constant clicking. My skin hurts to touch where I'm most swollen so all around my neck and thighs. Walking is painful.

 

I lost 20lbs/dropped 2 sizes this year through reducing carbs, then broadly going paleo, then a Whole 30 and I was in such a good place with my body (apart from mysterious on and off nausea) and I dread to think where I am with it all now. I'm going to take things easy this week and start my Whole 56 on Monday. Ugh. Thank you for advice and support. 

 

Update: I put on 8kg/18lbs in 10 days. 

 

Any tips on reducing inflammation and swelling FAST very welcome. 

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I can gain up to 5 pounds of water weight overnight if I even get a whiff of dairy, so I can sympathize with your dilemma...  I find alfalfa capsules helps my kidneys flush it out of my system.  I'll take 15 trips to the bathroom in a day when it's that bad, but it's totally worth it!  

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Thank you. I haven't had the chance to try either but I'm pleased to say that simply cutting the gluten out again and eating lots of vegetables/drinking tons of water has made a huge difference. I think there will be some residual inflammation for a while but within 24 hours the majority of the bloat had gone. I fit into my jeans again! I am tempted to post before and after pics as motivation for suspected celiacs

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Just wanted to add an update to how my past few months has gone with regards to this topic.

 

Doctor ordered a Celiac's panel the day I saw him, despite my saying I hadn't eaten any. It was obviously negative. I also got a referral to gastroenterology. Saw them, they had me take a test for the genetic markers for Celiac's, since it's highly unlikely if you have Celiac's not to have one of the two markers. They said they'd call me if it was positive and haven't, although I could have called them to double check. I have an appointment in February again to discuss before I move away to ensure all is good with them. The doctor, amusingly enough, said that there's no such thing as a gluten sensitivity/intolerance other than Celiac's. He said what I have would be "IBS that only reacts to gluten." Whatever. Call it what you like - get it in my medical records so that I'm covered.

 

Then, on December 23rd, I went to Red Lobster and got glutened HARDCORE. I knew there was flour in what I was eating, but decided, since we were out with friends with small children on a tight time schedule that were travelling through town, to eat it and deal with the stomachache. You can manage that easily enough.

 

Six hours later, I noticed pink bumps on my stomach. Hubby had a fungal thing on his wrist, so I assumed it was that but decided to wait and see. Next morning, bumps were more bumpy and red. By that night, the whole area around them had raised up so the bumps were on essentially a platform (does that make sense?) and itched like mad. By the time we went to my parents' house on the 27th, I was putting Lamisil on the bumps because they kept it from itching as badly, but it wasn't actually helping them go down. The bumps eventually turned into fluid-filled pustule things that, once that happened, hurt like mad. I also had incredible skin/muscle sensitivity/pain on that side of my body. Like from the bottom of my left breast down to the rash, then wrapped around my back and the muscles along my spine. 

 

The pain made me consider if it was shingles, but I saw the doctor today. Showed her the rash, the pictures I took of it, and she confirmed that it's dermatitis herpetiformis, the rash associated with Celiac's. It's finally going down, and they've prescribed oral steroids to minimize the inflammation in the area as well as dapsone, the cream used to treat the rash.

 

I go back to gastro next month, and will bring this up. I FINALLY HAVE AN ACTUAL DOCTOR WHO BELIEVES ME. I've felt like the crazy woman for so long, it's nice to have confirmation that I'm not.

 

If anyone wants, I can post the picture of the rash at its worst here for future reference.

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The antibody tests and DNA markers are great for some people, but I believe in the future there will an entirely different set of tests for those of us who fall into that "Other" category.

 

I get sick from corn too, but not to the same extent. I have a real problem with everything in the Prolamin group, but wheat is outstandingly the worst: http://en.wikipedia.org/wiki/Prolamin

 

MrsStick - I don't get any rashes, but I think a picture would be good as rashes are not always identified by doctors as being related to diet.

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Picture 1: This was taken in the morning on the 29th of December, so 6 days after initial gluten exposure. Notice the bumpy base layer sort of thing, with the fluid-filled bump on top.

 

IMG_20131229_090436.jpg?t=1389310570

 

Picture 2: Taken that same evening. Notice the increased inflammation/redness. It was excruciating at this point - the bumps on top were itchier than anything I've ever felt, but anything touching the bases was painful. Itch/pain combination = awful.

 

IMG_20131229_232020.jpg

 

 

 

 

DH/Gluten Rash/Celiac Rash can be pretty close together like mine, or for some people it's more dispersed. But the bumps look the same always - the platform/stage, and then the nasty fluid-filled thing on top.

 

Mine is still going away, even with the meds. It can take months for it to completely fade, or for some people it never will. It still occasionally itches or is painful to the touch...definitely not a pleasant experience. Loose clothes are the worst because they brush up against it, or brush up against the hairs that brush up against it...etc. I wear tight clothes or under-layers (tank tops) whenever possible.

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So, I've never even considered that I may have a gluten sensitivity at all, until after I completed my first Whole30. I did not do the reintros like I should have. I just kind of dove in head first and messed everything up. The reason I'm posting here is just after reading everyone's comments about swelling and inflammation. I've definitely been eating gluten and since I've got mad with eating anything I want, I feel so swollen, puffy, just gross. My whole body looks/feels swollen. I honestly don't know if it's from the gluten or something else. I really want to complete another W30 and then do reintros the right way to see.

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You have my complete sympathies!

 

I had to do the same thing and actually got so sick i could not finish the challenge. I have chronic sinus problems so it was horrible anyway, but when heart palpitations got to a scary point, I pulled the plug. On the plus side I now have absolutely zero temptation to eat gluten, I'd be happy to never see it again :D

 

A Whole30 afterwards will make you feel a lot better. My digestion went all wonky afterwards and komboucha helped me get back on track.

Try and make note of the symptoms as it goes on, as these may help you later in identifying reactions.

How long do you need to do it for?

 

Prior to the challenge, I tested as not positive to gluten antibodies by blood. I don't know whether I'm coeliac or just gluten intolerant, but the inflammation, sinus reactions, stomach noisiness is a clear signal my body does not like it at all. Ultimately my GP advised that the outcome of the test either way was still me avoiding gluten, positive coeliac test just lets you know more detail, but he also said many people do not test positive who are, because the test isn't perfect.

Curious to know what you meant by stomach noisiness...

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