Hala

Hello,

I've been gluten-free now for 11 weeks, but I've been experiencing frequent glutening-like symptoms, which I think I've tracked down to ingesting anything with corn flour/starch, maize flour/starch, soya and, to a lesser extent rice. (I am also lactose and egg intolerant - and possibly white potatoes too...?).

Anyway, I've stumbled across some articles that explain grain-intolerance in coeliacs.

Open Original Shared Link

(scroll down to What Is Gluten And Where Is It Then?)

Open Original Shared Link

Do these seem valid? It definitely fits in perfectly with what I've been experiencing!

I'm so sick of feeling so awful all the time! I avoid gluten and contamination like the plague but am still in pain/feeling sick and steadily losing yet more weight (and hope!).

I've had problems with tolerating any alcohol since my first coeliac symptoms started to arise....I completely skip the drunk stage and go straight to an awful sick/hangover stage....anyone else find alcohol a problem? Does this go away as we recover? I'm only recently diagnosed...

Thanks guys, I found some quite interesting articles online that explain a lot of the reactions I've been experiencing...

Open Original Shared Link

(scroll down to What Is Gluten And Where Is It Then?)

Open Original Shared Link

This is the mayo article on food allergies. Open Original Shared Link You mentioned a swollen face, which is what I think set both of us to thinking it was possible. You'll just want to keep alert for any of the additional symptoms that point to it being an allergy as opposed to an intolerance. If it is an intolerance, it sucks, and you want to avoid it, but if you accidentally eat some it'll suck and you'll get over it. If it is an allergy, it could become life threatening at any time. There is also a mayo article describing the difference between an intolerance and an allergy. Open Original Shared Link

Don't get paranoid. Just file it away and keep it in mind so that you don't get taken by surprise one day by an allergy you didn't know or suspect you may have.

Thanks for the information, I'll keep it at the back of my mind...

Incidentally, someone just suggested to me that I go for Vega testing for food intolerances. Does anyone know anything about the reliability/validity of this?

How do I find out if it's an allergy or intolerance? Surely if it's a similar reaction as a glutening then it must be an intolerance?

Ack, life has become so complicated since coeliac disease raised its ugly head....!

Hi everyone,

I'm in my 10th week since coeliac diagnosis/going gluten-free and I'm progressively becoming familiar with my many 'glutening' symptoms.

One of the symptoms I've noticed is a swollen face. If I've been glutened I get swollen cheeks and puffy eyes. Basically, I look like a hamster!

However, I've noticed I get these symptoms whenever I eat anything with cornstarch in it too. And possibly also soya too. Basically, whenever I eat any processed foods, even if specifically gluten-free. (I have found myself intolerant to gluten-free processed foods, like bread and pasta, and pretty much anything that's processed tbh! Also lactose, egg and white potatoes...)

Is it normal to get a glutening reaction to foods that you are intolerant to? I've read that cornstarch contains gluten, is this true?

Sorry for the confused ramblings, I think my cornstarch reaction may include the classic coeliac mind-fuzz as a symptom too....

Thanks,

Hannah

I think it depends on the extent of the damage.

My intestines were so damaged that the doctor was exclaiming during the endoscopy "classic coeliac duodenum" and afterwards he showed me a picture of my completely eroded intestines. They were so wrecked that there were no villi at all to be seen. Straight after the endoscopy he told me I definitely had coeliac disease and that I should go gluten-free immediately. The biopsy results later confirmed the extreme extent of the destruction. I was so shocked by how severe the damage was!

But I think for a lot of people the damage isn't as obvious or is more patchy so they have to wait for a biopsy before any diagnosis can be made.

I reckon so. I always get a bloated stomach and puffy cheeks after a glutening...

I recently made a post about this and found some interesting info about how lenient the labelling can be re: 'gluten-free'

I am also very sensitive and found out 2 months after going gluten free that I could not have corn. Corn is in everything. Maltodextrin is corn most of the time. If you are not sure, call the 800 number on the product. Be good at reading labels. It has saved me many times. If you are celiac, then you can be sensitive to other foods. It is good to rotate your foods to give your body a break if you are sensitive to a food or do the IGG blood test and eliminate the foods that you are sensitive to. I have been lucky with Elisa food testing. It is expensive but it is well worth it if you want to feel good again. Good luck.

Thanks Porkchop, but, as I said in my post, I live in the UK, where maltodextrin always wheat-based, so I doubt think it's a corn issue.

I have been rotating my (very limited range of) foods as much as possible, but my dietician said there wasn't a way to test for food allergies :S ???

Thanks again for the advice.

Anyone have any experience with being gluten-free in South Africa?

I'll be spending 2 weeks in game reserves for a university field trip. We will mostly be provided with food by the catering staff (who I have informed about my dietary restrictions) but when travelling we will stop by supermarkets/service stations to get food.

Thanks

Ooh, is there any way this could be made share-able on facebook? I wouldn't want to go as far as put it as a status/send out messages but would love some friends to read it....

Does anyone else have a problem with maltodextrin?

I'm in the UK and have had pretty severe 'D' for days now. I think I've traced it back to ingesting products with quite large amounts of maltodextrin (it was the second listed ingredient, behind water). I'm in the UK so it's wheat-based maltodextrin.

Will definitely avoid from now on! I'm a VERY sensitive recently-diagnosed coeliac, I seem to react to anything that isn't naturally gluten-free.

I've only been gluten-free for 6 weeks but I'm feeling the same way....it's really annoying!

Thank you! I feel a bit better now. Though I have improved, I still struggle not having to justify why I eat the way I do. It is a very charged topic for me, because at the onset of my autoimmune disease no one - friends, doctors - believed I was sick and they just insisted I had an ED, and I "ate like a rabbit" - because eating leafy greens and simple food is part of the cultural heritage of the poor, rural area I come from.

Even if I am overweight now, and having always been known as a connoisseur and a great cook, I still feel like I have to justify myself, probably because such misconception was, in my case, almost lethal, because they let me get to a BMI of 13 before someone did blood tests.

I think I need to stop apologizing because I have auto-antibodies...

Hi, sorry to drag up an old post, but I was wondering how long it took until you started to gain weight?

My weight dropped really dramatically before I was diagnosed with coeliac disease. I've been gluten-free for around a month now and I'm still not gaining much weight! I have a BMI of 13 too and I'm scared

Me too

It's comforting knowing I'm not alone!

Ok that paper is a summation of other studies and is enormous. :-S Which primary study does the 1ppm refer to or at the very least where does that paper say that?

Sorry, there's a summary on page 46

Also, I found an interesting paper today;

Open Original Shared Link

It states that, for some people with celiac disease, anything above 1ppm of gluten in food is enough to cause detrimental health effects.

In the UK, any food with under 20ppm of gluten is labelled as gluten-free. 20x the amount found to cause harm in this study!

Hannah.....if you have only been gluten-free for a few weeks, it's not unusual for anyone to experience a reaction to processed gluten free products. Your gut is still in the infancy of healing and you can have reactions to many foods, without it being related to gluten at all. This is far more common for many people than thinking you are reacting to perceived gluten in gluten-free foods. I would stay clear of them until your gut has had more time to heal and then try them again at a later date. This is the route many people have to go when healing.

I know that the UK has different standards for gluten free than other countries and know that they may use wheat starch in some products. Wheat starch is not allowed in the US and some other countries as some peope react to it. Perhaps you have been ingesting something that contains this and is causing the problem for you?

Yeah I think the UK are definitely a lot more lax on what is and isn't 'gluten-free'!. I'm finding a lot of the gluten-free foods I see in shops have barley or wheat starch. I definitely agree on giving my gut as easy a time as possible whilst it's healing!

Sounds a bit bats for a dietitian to recommend adding processed foods if you are already on whole foods.

Maybe you could speak to them and ask the logic, or if they think you are missing something in your diet.

The only other thing I can think is that some people in the UK (where I am too) think that celiacs will be more compliant and stick to gluten-free better if they have access to gluten-free foods. I think it is linked to the availability of gluten-free foods on prescription.

However if you are happy with whole foods that seems fine.

I just use occasional gluten-free processed food, rice pasta from Doves Farm and brownies. They can be convenient. More than that makes me sick. Some people find once they have healed they can use more products.

Good luck

Thanks for the advice and luck . Apart from it being inconvenient (especially when at uni all day!) and time-constricting, I am pretty happy with the whole foods diet. It's not much different to how I was eating before. The main problem is friends etc. wanting to go out for meals, which is tricky enough when you CAN eat the gluten-free processed foods!

Hi Hannah

I also so can't eat gluten free processed products or flour.

i am in the UK too and a friend whose daughter is diagnosed celiac told me that I couldn't have celiac if I can't eat the gluten free stuff - it must be something else ??? sigh !!!

I can't eat rice (really bad) or potatoes either so had wondered if due to intestinal damage I am also having problems with some carbohydrates - not managing to digest them. Jury still out on dairy products but luckily don't eat much of it.

I was resentful at first but am fine with whole foods (grain free) so am just hoping that in time I may be able to reintroduce small amounts.

I'm glad you're the same way, Lady Eowyn, my dietitian still won't believe me when I tell her other people experience it too!

I think my intestines are having trouble with pretty much everything I put in them, but some things (lactose, eggs, processed gluten-free stuff) definitely more than others!

I don't think anyone could have prepared me for the extent of this disease!

I start to feel sick, then I get awful stomach cramps (generally at night) and insomnia. I don't normally sleep at all on the night of a glutening. By the next morning I'll have a sore, bloated, 'dodgy-feeling' stomach and either 'C' or 'D' and transient nausea. I'll also be really lethargic, irritable and depressed and will have a killer headache.Basically, I should be avoided for the next few days at all costs, haha!

This is a well known phenomenon in certain circles.. It is really unfortunate that some doctors and dieticians are unaware of it. It would be good for you to educate yours. This writer explains it better than I can: Open Original Shared Link

Basically, there are different levels of tolerance among different celiacs. Some tolerate processed foods without any problems and some don't. I tolerate very few.

You may be able to tolerate some products, or small amounts of some products. What I do is try only one new product per week. I start with only a small amount so as not to make myself too sick if I do react to it. With only one a week, you can tell what is bothering you.

I'm glad it's a well-known phenomenon! Thanks, I'll show my dietitian that link if she still doesn't believe me! I definitely feel more in the know than she is, as she is convinced I should be feeling completely fine straight away (despite my attempts at telling her the gastroenterologist told me it could take me years to heal!)

I don't tolerate processed gluten-free foods, either. There are a few that are certified to lower levels than the average which I can eat and the reaction is not severe, but if I want to avoid all reactions, processed-food-free seems to be the way to go.

That said, you might also want to take a look at what ingredients are allowed in your gluten-free food. You mention that you got the gluten-free food on prescription, so I was wondering if you might be in the UK? In the UK, certain hydrolyzed wheat products are allowed in gluten-free foods. A recent development in tests for gluten, however, has determined that the gluten tests currently in use by the food industry are not as good at detecting gluten in hydrolyzed or fermented products. They underestimate the amounts.

I have spoken to a few celiacs in the UK who were able to eat processed gluten-free food once they eliminated any products that used gluten or gluten derived ingredients, even if those ingredients are considered safe. So if you are hoping to have processed food, or are ever in a situation where you are having trouble finding safe food, that might be worth thinking about, possibly?

Yep you're correct in thinking I'm from the UK . That's worrying about the underestimation of the amount of gluten, especially considering how serious it is for coeliacs to consume it...

At the moment I'm fine with the whole foods diet (although it's a little inconvenient and restricting!) but I think my dietitian would prefer me to be eating the processed food too... :/

Hi everyone

Has anyone else had problems with gluten-free processed products?

Since going gluten-free a few weeks ago, I've had a few episodes of very particularly bad GI symptoms (at lot worse from the generally milder symptoms I'm still experiencing).

Every time this was following eating processed gluten-free products.

One time it was after eating gluten-free vegetarian pie in a local cafe (I don't think I was 'CC'd as they are very respected...).

The other times were after eating the gluten-free pasta or bread that I got on prescription.

Other than the pie, none of the meals contained lactose (which I am avoiding as I am intolerant) so it can't be that.

I have completely cut out these gluten-free products, just sticking to whole foods, and since haven't had any severe GI problems.

I told my dietitian about my body's apparent intolerance to these gluten-free foods and she didn't really seem to believe me. Claiming I had either accidentally consumed products that were wheat- but not gluten-free (they were DEFINITELY gluten-free products) or that I must have IBS.

But I think as its specifically these products, it must be an intolerance rather than general IBS??

Thanks,

Hannah

Oh Hannah-

So sorry your experience with the nutritionist has not been good. I only saw one for a single visit after my Celiac diagnosis - she - affiliated with a major celiac center was of no help to me. I had already learned the "helpful" facts she knew. Live and keep learning while you use the knowledge that "some" of these professionals can provide.

If you are indeed seeing her next week - make sure you start the conversation with how disappointed that you are that she did not give you the proper information to go with your nutritional drink. If she doesn't apologize and answer YOUR questions...time to replace her. I like to give folks a chance to rise up and prove that a bad appt was an off day for them -- no need to stick with someone if they don't improve when given a second chance.

Glad to hear you are feeling a bit better -- hang out...click a few of the links GFinDC provided and let us know if we can help further.

Oh...my last post wasn't meant to persuade you to eat meat -- just know how hard it can be for a vegetarian to have to consider giving up more and more of their protein sources.

Hang in there

I managed to get her email address and sent her a long email explaining how upset I was and introducing some new questions. She apologised for me being kept in the dark but skipped over my questions as if she hadn't read them at all... She then said to contact her if I had any more enquiries before our next meeting on wednesday, so I sent her another email with some questions and got an out-of-office reply :/

I'm feeling consistently awful since starting the nutritional drink and micronutrient regime. Fatigued, nauseaus and awful muscle fatigue! It's so frustrating because I was just starting to feel better! I really don't want to continue with the drinks but I know she's going to prescribe me a higher dose when I return...

Thank you so much for being so kind

Donate it to friends/family?

When I got diagnosed I gave my housemates all the gluteny food that had been in my cupboard. We're all students so no one cared in the slightest that some of it had been opened!

Thanks so much again for the help and support guys, it's such a relief to know there are others out there in the world with the same experiences as me! I will definitely take up your advice (except I'm sorry, but I really won't eat meat! I get a lot of protein from other sources though like beans and buckwheat and these fresubin drinks).

I had a bit of a stressful day today! I got a call from the surgery this morning saying I had been booked in for an urgent blood test that morning, but no one knew why! So I turned up at the surgery very confused and asked if I could see my gp before the blood test, but they said he wasn't in and they would get him to ring me.

So I went for the blood test (for which they had no referral notes) and left the surgery feeling very confused! Just as I was leaving I got a call from the gp. He said that the nutritional supplement drinks I have been surprised could cause my malnutritioned body to go into shock and cause my livers and kidneys to fail, potentially resulting in death, so they had to monitor my blood levels to test for this :S. He then said that I have been prescribed high-dose micronutrient/vitamin tablets to try and combat liver/kidney failure and to return to the surgery to pick them up. I hadn't been told any of this, and no-one at the surgery seemed to know what was going on!

Anyway, I now have a bag full of vitamins/nutrient tablets that I have to take a ridiculous amount of several times a day along with these nutritional drinks. I'm really quite scared now, especially considering these drinks might be really harming me!

On the plus side, these last few days I've felt quite a lot better, although have been experiencing annoying 'C' and bloating, but less of the pain and headaches etc. .

I'm still not really happy with the dietitian (especially now after she didn't warn me in advance about the blood tests or extra nutrient pills!) but I'll see how next week's appointment goes...