Symptoms Returning?!?!

[nikky]

sorry if this has been discussed before,

i started the gluten-free diet 2 months ago and it seemed to be going well, but recently ive been feeling tired and just generally unwell, im also getting the same kind of pain i had when i was frequently eating gluten and as i type this i keep getting a tingling sensation in my left hand

i know that i havent had any gluten and that the coeliac is improving because ive had blood work that shows the levels of antibodies are dramatically lower than they were previously.

please help

[RiceGuy]

Like many others, it sounds like you have some nutrient deficiencies. I'd recommend magnesium and a sublingual methylcobalamin (B12) supplement. These two have proven indispensable for myself and many other members here as well. Other supplements to consider might be calcium, vitamin D, B complex, iron, zinc, and probably others I'm not thinking of.

I'm sure others will offer valuable advice too.

[nikky]

Other supplements to consider might be calcium, vitamin D, B complex, iron, zinc, and probably others I'm not thinking of.

ok, cacium dificiency is a definate no, (i have hypercalcemia) but i'll ask about anemia, i used to have it although my symptoms were a lot different

thankyou

[RiceGuy]

Just keep in mind that blood tests don't always pick up deficiencies. Many members here find great benefit from supplements even when tests say their levels are fine.

[nikky]

i'll keep it in mind thankyou .... as for tests not being acurate or picking things up its already happened

[AliB]

Sounds like you definitely have nutrient deficiencies.

The problem with dropping gluten is that you are no longer getting the nutrients that this group of foods supplied - even though it was causing damage, there were still some benefits so the most important thing, when you drop gluten and any other group like dairy is to take extra support in the form of supplements.

There is no need to overdo it but just take a good multivit, mineral and elemental tablet or two. It might be an idea, especially with the numb/tingly fingers to get your thyroid level checked as it can often be an initial indicator of a lower level. It might only be sub-clinical, in which case the blood test wouldn't log it as anything other than normal, but if it is on the lower side of 'normal' there is a strong chance that you need support. Taking a few kelp tablets and eating marine vegetables and seafood and fish regularly would help to raise the levels.

Unfortunately deficiencies are not something that the Medical Profession looks for or is very interested in unless they manifest as something more serious like Anemia, but any malabsorption, even low-level will impact on the body's ability to repair and maintain itself and stop degeneration into more serious health issues.

Because you are getting pain, it could also be that you have developed an intolerance to another food that you consume regularly. That is why it is best to rotate foods and try to leave at least 2 or 3 days between repeating the different foods.

Hope this helps. It might help also, if you can afford it, to see if you can pick up a health professional, even alternative who would be more adept at tracing and pinpointing your nutrient levels.

[AliB]

Sorry, oops, I didn't mean 'stop degeneration', I meant 'cause degeneration'!

[nikky]

thankyou, i'll run it all past my pearents and i'll talk to my GI about getting checked for deficiencies and other intolerances, luckily it wont cost me anything because of where i live

thankyou both for all your advice

[good4something]

Husband in the same situation -- celiac markers are good but he's back to feeling poorly. Fatigue, brain fog, etc. Diagnosed about 10 months ago. Checking liver functions. Your thoughts?

[nikky]

Husband in the same situation -- celiac markers are good but he's back to feeling poorly. Fatigue, brain fog, etc. Diagnosed about 10 months ago. Checking liver functions. Your thoughts?

i actually had my liver function tested nothing showd up.. im inclined to think that i have anemia again or that the hypercalcemia is effecting me more than we thought ... but both of those seem unlikely seeing as the symptoms are different to the ones i used to get with anemia

[Pennyb]

My daughter had some similar symptoms, we found out she had a bacteria overgrowth in the intestines, it didn't show up on any of the initial tests. She went on antibiotic for 10 days and then heavy doses of probiotics for three weeks. Now she is down to normal doses of probiotics and feeling good again.

[jerseyangel]

Another possibility--and something that happens not too infrequently--is that you may have other intolerances that are making themselves known now that the gluten has been removed.

This happened to me, and it took a while to identify the problimatic foods. I consulted with an allergist/immunologist, who after ruling out true allergies (skin prick testing), suggested an elimination diet.

Some common intolerances are soy, dairy, corn and tapioca. I list those for you as a starting point--you may have others.

SIBO (small intestinal bacterial overgrowth) is something else you may want to discuss with your GI. I was helped greatly with 2 rounds of antibiotics.

Don't dispair--I know how it feels to finally feel better, only to have the symptoms come back. For some of us, it takes more than the gluten-free diet in the beginning--but things do get better. Hang in there, and feel free to contact me anytime

[Guest Kidsmoke]

Hello,

First time poster on this forum but have read a lot of the content over the past 12 months or so and found it very useful. I was diagnosed with coeliac disease on 14 February 2007 and have been trying very hard to stay gluten free for a year. I know for certain I have been glutened at least once (in a restaurant with moronic italian waiter who served me gluten-free vegetable soup containing pasta) but other than that have stuck to the diet and am pretty paranoid about what i eat.

I haven't felt well since 1998 when I picked up a really serious virus when on holiday in France, i now think that probably triggered coeliac disease. Had numerous health problems/symptoms over the past 10 years or so which I won't bore you with but hoped that when I was diagnosed I had finally found *the answer*.

I have improved a bit over the last year but recently have been feeling bad again and many of my symptoms have been returning. Main problems now are nausea (first thing in the morning and at meal times), vertigo (my doctor thinks I may have labyrinthitis but the pills i was given don't make any difference) random joint pain, and fatigue/brain fog. I am pretty sure I am not being glutened (checking everything at eat) so am a bit puzzled - some of the info on this thread was very useful so thanks.

I go for my annual check up next week at the hospital and will be sure to ask about bacterial overgrowth. If anyone thinks of anything else I should be asking my GI let me know.

Take care everyone

MJ

[nikky]

Hello,

I have improved a bit over the last year but recently have been feeling bad again and many of my symptoms have been returning. Main problems now are nausea (first thing in the morning and at meal times), vertigo (my doctor thinks I may have labyrinthitis but the pills i was given don't make any difference) random joint pain, and fatigue/brain fog. I am pretty sure I am not being glutened (checking everything at eat) so am a bit puzzled - some of the info on this thread was very useful so thanks.

nice to meet you, im sure you'll find loads of helpful people on here

thankyou everyone that has replied, all your information and advice has been really apreciated

[AliB]

I have improved a bit over the last year but recently have been feeling bad again and many of my symptoms have been returning. Main problems now are nausea (first thing in the morning and at meal times), vertigo (my doctor thinks I may have labyrinthitis but the pills i was given don't make any difference) random joint pain, and fatigue/brain fog. I am pretty sure I am not being glutened (checking everything at eat) so am a bit puzzled - some of the info on this thread was very useful so thanks.

MJ

Hi MJ

I went gluten-free/DF at the end of Jan. Whilst my initial main problems cleared up and I have had some more energy, I am still getting other symptoms.

I have come to realise that although gluten and dairy is certainly an issue, my main problem is that I seem to actually be carbohydrate intolerant. I know I have had a problem processing carbs for years - latterly indicated by becoming diabetic, but now I do not seem to be able to tolerate them at all, and sugar is the biggest culprit.

Around the middle of January my digestion collapsed. It had been getting worse for some time and I was in an awful lot of pain with my stomach but after starting gluten-free/DF it was starting to get better within hours! I have cut out gluten, dairy, and most carbs and sugars as I am sure that Candida is a problem for me - probably causing 'Leaky Gut syndrome' or some other insidious nasty.

It is quite likely that your joint problems, labrynthitis, and fatigue is due to a bacterial overgrowth/systemic candida. Sugar is recognised as a trigger for fatigue and brain fog etc. The ONLY way to control it is to radically cut sugar/carbohydrate consumption. People forget that it is not just sugar that turns to glucose in the body, but also carbohydrates. There are other forms as well as glucose, dextrose, maltose, lactose (you might also be, like me, dairy intolerant), etc. Our 'western' diet involves a huge amount of sugar and carbohydrates.

If you look at tribes and communities that are healthy, the one thing they have in common is low carbohydrate consumption. Those communities remain healthy until they start to consume 'western' foods. I know that I now have to relegate carbohydrates to their proper place - an occasional treat, rather than an everyday consumption.

When you think about the amount of carb people consume in a day, it is no wonder we are so sick and overweight! They will have tea/coffee with sugar when they rise, along with biscuits/cookies, they will have toast or sugary cereal for breakfast, they will likely have a carb mid-morning snack, sandwiches for lunch, another snack in the afternoon, all with more sugary drinks, and carbs with their dinner in the form of potato, rice, pasta, etc., then will spend the evening in front of the TV nibbling at yet more carbs, and not to mention the beer or other alcohol. Yes, they might have healthy protein and vegetables, but these are vastly overshadowed by their carbohydrate consumption!

We are just overwhelmed with the stuff - it is rammed down our throats almost literally. It is everywhere and in everything! It is good to look at and lovely to eat - but it is killing us! I wish someone would set up stores just selling gluten free, dairy free and sugar free foods. Shopping has gone from being a pleasure to being a chore. Everywhere I turn I am being overwhelmed with gluten or dairy or sugar. It is such a pain. I have noticed that some who have to avoid gluten, because they feel so deprived actually end up supplementing with more sweet sugary carb gluten-free foods and then wonder why they don't feel any better!!!

You can mention the possibility of Candida to your doctor but I do not think he/she will take it very seriously. The medical profession is not particularly interested unless it is something they can treat with a nice expensive drug. You might be offered Nystatin, or Diflucan. On its own it is no better than a sticking plaster. The candida can become resistant to it. Cutting sugar and carbs is the only way. The more sugar and carbs we eat, the more the candida has to grow to absorb it. Cut the sugar and carbs it will die back to a controllable level.

It would be handy if you could get your nutrient levels checked. Again that is not something the medical profession seems to do, so you might need to see if you could find an alternative practitioner who could do that. As you live in Edinburgh, if you can afford it I wonder if it might be worth you seeing Jan de Vries? He has had good success treating people with alternative remedies and is, as far as I am aware, an advocate of the benefits of gluten-free, not just for Celiac but for other conditions.

I do hope you manage to get your problems sorted out. This forum is a very good place to start.

[YoloGx]

Hi MJ

I went gluten-free/DF at the end of Jan. Whilst my initial main problems cleared up and I have had some more energy, I am still getting other symptoms.

I have come to realise that although gluten and dairy is certainly an issue, my main problem is that I seem to actually be carbohydrate intolerant. I know I have had a problem processing carbs for years - latterly indicated by becoming diabetic, but now I do not seem to be able to tolerate them at all, and sugar is the biggest culprit.

Around the middle of January my digestion collapsed. It had been getting worse for some time and I was in an awful lot of pain with my stomach but after starting gluten-free/DF it was starting to get better within hours! I have cut out gluten, dairy, and most carbs and sugars as I am sure that Candida is a problem for me - probably causing 'Leaky Gut syndrome' or some other insidious nasty.

It is quite likely that your joint problems, labrynthitis, and fatigue is due to a bacterial overgrowth/systemic candida. Sugar is recognised as a trigger for fatigue and brain fog etc. The ONLY way to control it is to radically cut sugar/carbohydrate consumption. People forget that it is not just sugar that turns to glucose in the body, but also carbohydrates. There are other forms as well as glucose, dextrose, maltose, lactose (you might also be, like me, dairy intolerant), etc. Our 'western' diet involves a huge amount of sugar and carbohydrates.

If you look at tribes and communities that are healthy, the one thing they have in common is low carbohydrate consumption. Those communities remain healthy until they start to consume 'western' foods. I know that I now have to relegate carbohydrates to their proper place - an occasional treat, rather than an everyday consumption.

When you think about the amount of carb people consume in a day, it is no wonder we are so sick and overweight! They will have tea/coffee with sugar when they rise, along with biscuits/cookies, they will have toast or sugary cereal for breakfast, they will likely have a carb mid-morning snack, sandwiches for lunch, another snack in the afternoon, all with more sugary drinks, and carbs with their dinner in the form of potato, rice, pasta, etc., then will spend the evening in front of the TV nibbling at yet more carbs, and not to mention the beer or other alcohol. Yes, they might have healthy protein and vegetables, but these are vastly overshadowed by their carbohydrate consumption!

We are just overwhelmed with the stuff - it is rammed down our throats almost literally. It is everywhere and in everything! It is good to look at and lovely to eat - but it is killing us! I wish someone would set up stores just selling gluten free, dairy free and sugar free foods. Shopping has gone from being a pleasure to being a chore. Everywhere I turn I am being overwhelmed with gluten or dairy or sugar. It is such a pain. I have noticed that some who have to avoid gluten, because they feel so deprived actually end up supplementing with more sweet sugary carb gluten-free foods and then wonder why they don't feel any better!!!

You can mention the possibility of Candida to your doctor but I do not think he/she will take it very seriously. The medical profession is not particularly interested unless it is something they can treat with a nice expensive drug. You might be offered Nystatin, or Diflucan. On its own it is no better than a sticking plaster. The candida can become resistant to it. Cutting sugar and carbs is the only way. The more sugar and carbs we eat, the more the candida has to grow to absorb it. Cut the sugar and carbs it will die back to a controllable level.

It would be handy if you could get your nutrient levels checked. Again that is not something the medical profession seems to do, so you might need to see if you could find an alternative practitioner who could do that. As you live in Edinburgh, if you can afford it I wonder if it might be worth you seeing Jan de Vries? He has had good success treating people with alternative remedies and is, as far as I am aware, an advocate of the benefits of gluten-free, not just for Celiac but for other conditions.

I do hope you manage to get your problems sorted out. This forum is a very good place to start.

Well said, Ali! I too struggle with yeast still. It is hard to never have anything sweet--so I use stevia. It helps a lot. But I also have to limit the amount of fruit I eat or it comes back. And the errant (fortunately now non gluten) cookie that my mother NEEDS upstairs that is always available doesn't help. I also find I need to cook my fruit for some reason.

Though for now I am trying my best and sticking with a paleo diet (meat, veggies and some fruit) for the most part to kick the little buggers out though I do eat cooked roots and often eat washed, cooked quinoa in the morning. There have been times I am even off that. Various herbs help too--like occasionally barberry, pao de arco, oregon grape root and also occasionally wormwood etc. Plus of course pro biotics...

Meanwhile I still vouch for taking marshmallow root and enzymes bromelain/papain and pancreatin to help heal and soothe the lining of the gut and make it more functional which is after all the start of the problem.

Yolo

[AliB]

Hi Yolo.

I find I have to cook fruit as well - I have occasionally had allergic or strange reactions to things like apples, plums and oranges, and peaches and nectarines are a definite no-no, I can't even touch them! Yet I can eat them as tinned fruit. Weird eh?

It is a bind not being able to have much in the way of sweet things but I am finding that the longer I go without them, the less I need them - and then I keep telling myself that if I lived in say, the Kalahari, the only occasional sweet thing I would have might be a melon, or some other fruit - they don't have the likes of Tesco or Wal-mart to 'pop' to for a stock of goodies! In fact, the diet of the tribespeople often consists mainly of bitter berries, roots, nuts, small animals and an occasional kudu! You can't get much lower carb then that!

The thing is, they eat it and they are content - because they know no different! They don't crave a chocolate eclair because they have never seen or tasted one! I watched a program where 8 fat people from the UK went to live with a group of tribespeople in the Kalahari for 2 weeks - the natives were gobsmacked by all the weight, and these bolshie, irritable, argumentative people! They had to go out with the natives (sometimes for miles!) and catch or pick their food. Initially they wouldn't eat it, but eventually it dawned on them that if they didn't, there was nothing else!

It was such a life-changing experience for the 4 (3 women, 1 man) that lasted the course (3 of the 4 returnees were men, and the woman had to leave because she was ill - nothing life threatening though, just dehydration!). Very interesting experience for them.

Quinoa for breakfast sounds good. What do you have with it?

[gia104]

thankyou, i'll run it all past my pearents and i'll talk to my GI about getting checked for deficiencies and other intolerances, luckily it wont cost me anything because of where i live

thankyou both for all your advice

Some really great advice from posters, and likely the reason for your symptoms. I have had celiac for about 2.5 years now, and like you, have had some return of symptoms periodically no matter how strict my diet. After multiple tests, some of my abdominal discomfort is actually NOW due to my gall bladder. With celiacs, it is common for gall bladder stones and 'sludge' to occur and cause problems relatively quickly. Something to keep in mind for all of us special dieters.

[YoloGx]

Hi Yolo.

I find I have to cook fruit as well - I have occasionally had allergic or strange reactions to things like apples, plums and oranges, and peaches and nectarines are a definite no-no, I can't even touch them! Yet I can eat them as tinned fruit. Weird eh?

It is a bind not being able to have much in the way of sweet things but I am finding that the longer I go without them, the less I need them - and then I keep telling myself that if I lived in say, the Kalahari, the only occasional sweet thing I would have might be a melon, or some other fruit - they don't have the likes of Tesco or Wal-mart to 'pop' to for a stock of goodies! In fact, the diet of the tribespeople often consists mainly of bitter berries, roots, nuts, small animals and an occasional kudu! You can't get much lower carb then that!

The thing is, they eat it and they are content - because they know no different! They don't crave a chocolate eclair because they have never seen or tasted one! I watched a program where 8 fat people from the UK went to live with a group of tribespeople in the Kalahari for 2 weeks - the natives were gobsmacked by all the weight, and these bolshie, irritable, argumentative people! They had to go out with the natives (sometimes for miles!) and catch or pick their food. Initially they wouldn't eat it, but eventually it dawned on them that if they didn't, there was nothing else!

It was such a life-changing experience for the 4 (3 women, 1 man) that lasted the course (3 of the 4 returnees were men, and the woman had to leave because she was ill - nothing life threatening though, just dehydration!). Very interesting experience for them.

Quinoa for breakfast sounds good. What do you have with it?

Hi Ali,

What you say about the tribes people I think is relevant. I need not to think of myself as deprived. I have often done without anything sweet at all and feel better for it usually. I think my celiac condition wouldn't be a problem at all if I lived primitively.

Nevertheless these days I have been cooking up a banana or apple to put with my quinoa in the morning. I usually also add some sunflower seeds and butter. Sometimes I add coconut milk. Sometimes I forgo the fruit. If I want to sweeten it I add a little stevia powder. Its also good with a bit of chicken and veggies however--which is what I did for a long time and may need to do again now that my kidneys have gotten tender again. This is what comes of getting multiple inadvertent trace exposures of gluten. But maybe again, its too much fruit?? Even if it is cooked...

Its interesting that you have this same uncooked fruit allergy. My brother with Down's and celiac has it too, except he can eat raw bananas. The one kind of fruit I seem to be able to handle without cooking is papaya. Bananas for me are a little iffy uncooked. You go figure. My eldest sister also has a fruit allergy. She only seems to handle tropical fruit though I don't think she has to cook it.

I wonder if its the enzymes or what. I can handle taking ascorbic acid but vitamin C made from oranges etc. is out. By the way, in live blood analysis it shows my cells have lots of vitamin C whether I take it as a supplement or not so I often just don't.

I also am allergic to all nuts and sesame seeds. Occasionally I eat almonds but I can't do it too often.

I haven't tried eating tinned oranges. Maybe I should sometime but not now. Fresh Oranges at least really get my kidneys inflamed.

Its a good thing I like to cook and am able to plan ahead.

Pretty weird, eh? Do you think its an English and/or Swedish thing? My grandmother's family was allergic to nearly everything. She had a brother who spent his life at sea since being on land was too hard on him. At least I am not allergic to many pollens.

Yolo

[AliB]

Hi Bea. Yes I have always been fruit intolerant - had my first allergic reaction to an apple when I was 19. I found the same with peaches and nectarines - I couldn't even touch them or cut them up for the children. Haven't had a fresh one for so long, I haven't a clue whether I could eat one now or not but I'd rather not risk it!

I know what you mean with bananas. Funnily enough I can eat one with something else, say yogurt or (as I used to) cream, but eating one on its own would leave my stomach decidedly unhappy. I seem to be ok with them cooked too.

Plums bring up blood blisters on the inside of my mouth although I had one a while ago peeled so maybe it, and possibly other reactions are more likely either enzyme related or more likely, chemical reactions. I have a friend who had a bad reaction to some carrots. She took then along to her local herbalist and he tested her with some organic carrots and the ones she had. She was ok with the Organic. When he tested her against the chemical list, she reacted badly to Lindane which is a pesticide. Do you know they put that stuff into children's nit shampoo???? No wonder we are so sick!

More and more people are falling prey to the bombardment of toxic chemicals and rubbish that we are being exposed to constantly. When I look around me, I see so many of my friends, sick and in pain. There has always been sickness but I don't know anyone who is truly well!