CeliaCupCake

Thank you, Lucia.

Thanks Skylark for the very helpful SCD lists and scdrecipe.com links, and yes, I’d prefer to follow the SCD than the GAPS. I think you need to be a bit of a domestic goddess to follow the GAPS, and the kitchen’s the last place I want to be!

After my second endoscope the GI said it looked like I *might* have refractory sprue. When they looked at the biopsies by microscope they found more eosinophils rather than T lymphocytes, which would be more indicative of a second food intolerance...maybe. I guess a lot of the Dx is up to the person looking at the slides? That's why I've been referred to Mayo, and they requested all of the slides from previous scopes.~ Bubba's Mom

I do hope the Mayo find more conclusive answers for you. I hate cavalier decisions made about something as serious as celiac disease.

If you want to try the coconut oil I highly recommend the Nutivia brand organic extra virgin. It has a wonderful taste and smells good too. ~ Bubba's Mom

I do hope it’s worth it as it’s very pricy compared to vegetable cooking oils.

If you are wanting to avoid starches..maybe try using the coconut flour for baking? ~ Bubba's Mom

Oh goodie, so I don’t have to cut out cakes and biscuits after all(I have a sweet tooth).

I'm wondering if you have access to a library? You might be able to check out various cookbooks related to the Specific Carbohydrate Diet, etc.? ~ Bubba's Mom

Yes, I do have lots of access to them, but don’t have the time searching for and returning the books. I prefer to search and buy what I want from the web.

Have you tried taking a digestive enzyme when eating starches? I've found they help quite a lot.~ Bubba's Mom

Gosh, I had no idea there was one! I know there’s one for lactose intolerance as I bought some, to later discover from a hydrogen breath test that I wasn’t lactose intolerant after all, so they ended up in the bin.

I see my coeliac specialist tomorrow after a long wait, so shall ask him about those enzymes and other suggestions made here.

So sorry you

I'm sorry things are so bad, TTNOGluten, despite being gluten-free for six months and now, like myself, finally having normal celiac biopsies.

Maybe you should also try the Specific Carbohydrate Diet (starch-free) diet, as advised above. I have now tried it for almost a week and for the first time in a couple of years have seen a marked improvement. To be certain it was this diet working rather than my new meds finally kicking in, I returned to eating starch again today and surprise, surprise, my symptoms have returned. I'll give it a few more days consuming starchy foods and if my symptoms cease again when I return to a starch-free diet that'll be enough to convince me that a starch-free diet is worth adopting, at least until my system is strong enough to tolerate starch again.

Skylark,

I have now increased my probiotics from 3 billion to a 30 billion and decided not to purchase the GAPS book as I’ve found a webpage which covers the GAPS diet here Open Original Shared Link

You might want to get hold of Natasha Campbell-McBride's book

Some people like the buzz and the "don't have to care anymore" feeling.~ Takala

Certainly doesn’t have that affect on me – quite the contrary! I’m not too happy about resorting to a drug either. I’ve never taken anti-depressants in my life before but I’ll give anything a try that a leading celiac specialist prescribes, if only to say I tried it and it doesn’t work.

I'm near speechless that somebody would make themselves sick to see somebody twice a week. He's "inconvenienced ? by the cross contamination issue ?" Too bad. But, alas, sounds as if you are just using him as an excuse to keep consuming trace gluten. ~ Takala

Far from it. I have gone to extreme lengths to ensure I do not touch even trace elements of gluten including in my cosmetics, oral hygiene products (I personally write to manufacturers) and vitamins (i.e. multivits, B complex, B 6 & 12, calcium and magnesium, as you suggest. I take all those along with fat soluble vits that celiacs find difficult to digest). I have no desire whatsoever to consume gluten but it is an extremely difficult job convincing friends who insist on inviting us for meals about cross-contamination and the consequences of accidents. It isn’t just my partner I’ve agreed to accept meals from, but a friend who persistenly invites me for a meal, insisting she will “be careful”. I’ve agreed because my celiac specialist consultant insists the occasional accident is no big deal and not to get paranoid about it, otherwise quality of life from the stress becomes more of an issue than the celiac disease itself. To an extent I tend to agree. Convincing friends/family of the importance of rigid adherence to a gluten free (and other) diet isn't easy. It’s easy enough for me to understand because I research celiac disease obsessively, but family and friends who have only just become aware of the disease take some convincing - you can't educate them overnight.

If you continue to consume gluten, as a celiac, you will never heal and never get better.

I haven’t consumed a trace of gluten in 8 months and am no better, even though all tests now show that my gut is normal again. I will take heed of advice here about other possible food allergies/intolerances (my consultant also suggested the issue may also be other food intollerences besides gluten) and follow an elimination diet at some point, after I have followed my consultant's advice and given the meds a fair trial.

Thanks so much for everyone

I hope this isn't a stupid question but are you talking about a long-term or even lifelong diet there? It can't just be temporary until my gut heals, can it, because my gut has already healed (and I'm no better).

Also, is it just veg that has to be non-starchy, or fruit too? I ask because I eat lots of bananas (which are starchy).

By the way eating produce and meat for a bit like Dilettantesteph IS basically trying the SCD. It's that easy. You just have to be sure the produce isn't anything starchy like potatoes. ~ Skylark

If it's that easy I will definitely try it, Skylark. Thank you.

Consider trying Specific Carbohydrate Diet. It's a grain-free diet that was developed in the '40s for "sprue". Back then they knew that elimination of only wheat wasn't enough for everyone and they worked out empirically what foods worked best and what to avoid. Open Original Shared Link

Thank you for the link, Skylark. I'll hang on to it and consider the diet if/when I reach the point of total despair. The gluten free diet is challenging enough without following an additional rigid diet like that too.

I wonder how common it is for celiacs to continue with usual symptoms despite their guts being repaired?

Thank you Dilettantesteph, the interview is interesting. I have never tried a trial diet of only produce and meat, so maybe I should.

Many thanks all for your kind feedback

Three years after dramatic bowel changes and swollen (bloated) abdomen, I was diagnosed with celiac disease from blood tests and the biopsy. Since then I have adhered rigidly to a strict gluten-free diet, including avoidance of any possible cross contamination, even ensuring skin products are gluten-free. Five months later a second biopsy showed that my villi have totally repaired since being gluten-free. However, I am still no better in myself - still have all the same symptoms after 8 months now on a strict gluten-free diet.

The strange thing is that prior to the firm celiac disease diagnosis, during the time when celiac disease was only suspected, I followed a strict gluten-free diet for four months and was no worse when I later came off the gluten-free diet and consumed as much gluten as I wanted (lots!)

I use cherry-flavoured Lypsyl, which is gluten-free Open Original Shared Link

I live in the UK and was told by a staff member of a coeliac organisation not to worry about gluten in skin products, even in lipsticks, as gluten needs to be literally eaten to be affected by it. I reminded her that lips get licked, but she was adamant that coeliacs don't need to avoid gluten in lipsticks. I was surprised to hear such inaccurate information from a highly respected coeliac organization. Surely, licking gluten off lipstick amounts to the same as licking gluten off ice cream.

I use Max Factor lipsticks as they informed me that there is NO gluten in any Max Factor products with the exception of Max Factor Natural Minerals Foundation.

You explained it well. It was me just being dim. I see what you mean now. Thanks for the clarification.

Thank you for your advice, Mushroom. It

I hope you don

Wishing you all a very Happy & Healthy 2011!

Dixiebell, thanks for the advice. I wouldn't be surprised if quitting smoking can trigger celiacs as well as other illnesses that are caused by stress because quitting smoking IS stressful.

I'm new here and hope it's okay to post to an old(ish) thread.

Yes, developing a ravenous appetite has been an issue for me too for about three years, and now I've been diagnosed with celiacs (well, half diagnosed with positive bloods and negative biopsy) it's all adding up.

Last year I went to see my doctor about putting on two stone and being starving all the time, and how nothing on earth would shift the weight, even when I went on a 1000 calorie a day diet. I put it down to quitting smoking and depression that also started at around the same time. I was convinced it was my thyroid as I had all the symptoms (overweight, depression, mental and physical sluggishness, very dry skin, etc) and it turned out to be celiacs.

I've been gluten free for a couple of weeks and have had days where the hunger isn't half as bad so I live in hope that once I start to heal, I'll be less hungry and be able to shift this excess weight.

I understand that the hunger is due to malabsorption. Please anyone correct me if I'm wrong as I'm a learner celiac.

I totally agree with sa1937 and Jestgar.

My blood test came back positive (not significantly high, but positive nevertheless) and I've recently received the biopsy result which is negative. I've been gluten free for a couple of weeks now with some improvement. I won't be seeing my GI for quite some time, so he conveyed a messaged to me via his secretary to take it that I have celiacs considering the positive blood test and response to a gluten-free diet, and to continue with the gluten-free diet until I see him again.

I

Hello Suzanne,

40

Thanks to all the posters who take their time to write out their stories, tips and advice

Ditto! Many thanks to all posters too!

I'm a newbie here and can't find where else to say thanks for such a wonderfully helpful and informative site, so I hope this forum will do. I've learned more at Celiac.com in a few hours than I ever learned from all the doctors I've seen about my celiac issues, and the support here has been immediate - no need to wait an eternity for the next medical consultation, where doctors can't get you out of their room quick enough (I'm from UK). Celiac.com is a godsend and so appreciated! Thank you!

Have a very Merry Christmas!

Thanks so much everyone for your very helpful replies.

Staying gluten-free is an excellent idea and you might follow up with your doctor about whether he will diagnose you with the combination of response to the diet and antibodies. I understand you get some reimbursement for food in the UK?

Yes, diagnosed celiacs do, but not NCGI, which is very unfair considering they have the same additional expense of gluten-free dieting. So yes, I will certainly push for a celiac diagnosis not only for this reason but especially for the fact that, sadly, you get taken more seriously with a celiac diagnosis.

On a test with a range of 0-6.9, 21 is definitely positive. The magnitude is not important, as the test results do not correlate well with the amount of damage (as you're seeing). The TTG test ranges are in arbitrary units and are calculated differently from lab to lab so you can't compare your result to one from a different diagnostic lab.

It