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BungalowBill

New Symptoms After Starting Gluten-free Diet?

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Hi all,

First post, be kind to me!

I am 31 year old male, resident in the UK. I was diagnosed as Celiac after suffering from recurring diarreah and stomach cramps over a period of 10 years - originally this was diagnosed as Irritable Bowel Syndrome, but only when my mother (aged 54) was diagnosed Celiac 6 months ago, and her GP advised her to get her offspring to be tested, did my diagnosis get made in about April this year.

I am now about 4 months into a gluten free diet, and although the diarreah and stomach cramps have cleared up a treat, I am now finding myself with other symptoms, and I was wondering if anyone could confirm whether or not this is unusual -

Fatigue - I'm not tired (as in needing sleep), but I just feel worn out all the time - I yawn a lot too, even after a good 8 hours sleep. In turn, this is making me irritable and grouchy. I'm not out of energy, because I walk a lot (3 miles a day, sometimes further) and work keeps me active and looking after my kids is hectic, but I swear these don't wear me out!

Light-headiness - My head just feels generally "fuzzy" - it's not a headache, it's not a migraine - it's just a general odd sensation, a feeling that something is "not right" - it's very hard to describe! It almost feels like nausea, but without the sickness. Sometimes I find this affecting my concentration.

Aches - Occasional feeling of heaviness and general aching in my arms.

Restless Leg Syndrome - Find myself sitting there bouncing my legs erratically and without self-control. I did read on another forum that this is common in Celiac's if you aren't getting enough Iron, so I started taking Vitamins with Iron. Every day when I find my legs going mad (normally first thing in the morning), I pop one of the Vitamin and Iron pills - that seems to keep it in check for the rest of the day.

Is it possible that the change in my diet, particularly the cutting out of the gluten, could allow these other symptoms to come through, or are they just general symptoms of Celiac (and if so, why did I not notice them before I was diagnosed!)?

All the best,

Bill.

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Hi and welcome!

I'm newer at this than you are, so I may not be much help, but I had some ideas so I thought I'd give it a go :)

I went through what might have been gluten withdrawal. I was so sure that I was 100% gluten-free and still feeling fatigued. Your body is still healing and getting used to a new diet so it may be an adjustment period.

Is your house gluten-free? If not, you may want to double-check everything you are using and being careful about cross-contamination in your kichen. You may still be getting trace amounts of gluten and as your body heals you can actually become more sensitive to accidental "poisonings".

Have you had your B12 and iron levels checked at the DR? Many people with celiac disease have a lot of vitamin deficiencies and they are usually so severe that a simple multi-vitamin doesn't help. Low iron and B12 (anemia) usually causes fatigue.

Your fogginess is a common symptom among people when they get glutened, so you'll want to make sure you're being 100% careful and diligent about everything you are eating!

I did find that new symptoms arose after starting my gluten-free diet and they are slowly starting to subside also. I had to cut out caffeine (my morning coffee -- that was hard!) as the caffeine crash was magnified so much that I would be fatigued and fuzzy-headed all day long from one cup of coffee. I sure do miss it though!

Good luck :)

Jillian

Hi all,

First post, be kind to me!

I am 31 year old male, resident in the UK. I was diagnosed as Celiac after suffering from recurring diarreah and stomach cramps over a period of 10 years - originally this was diagnosed as Irritable Bowel Syndrome, but only when my mother (aged 54) was diagnosed Celiac 6 months ago, and her GP advised her to get her offspring to be tested, did my diagnosis get made in about April this year.

I am now about 4 months into a gluten free diet, and although the diarreah and stomach cramps have cleared up a treat, I am now finding myself with other symptoms, and I was wondering if anyone could confirm whether or not this is unusual -

Fatigue - I'm not tired (as in needing sleep), but I just feel worn out all the time - I yawn a lot too, even after a good 8 hours sleep. In turn, this is making me irritable and grouchy. I'm not out of energy, because I walk a lot (3 miles a day, sometimes further) and work keeps me active and looking after my kids is hectic, but I swear these don't wear me out!

Light-headiness - My head just feels generally "fuzzy" - it's not a headache, it's not a migraine - it's just a general odd sensation, a feeling that something is "not right" - it's very hard to describe! It almost feels like nausea, but without the sickness. Sometimes I find this affecting my concentration.

Aches - Occasional feeling of heaviness and general aching in my arms.

Restless Leg Syndrome - Find myself sitting there bouncing my legs erratically and without self-control. I did read on another forum that this is common in Celiac's if you aren't getting enough Iron, so I started taking Vitamins with Iron. Every day when I find my legs going mad (normally first thing in the morning), I pop one of the Vitamin and Iron pills - that seems to keep it in check for the rest of the day.

Is it possible that the change in my diet, particularly the cutting out of the gluten, could allow these other symptoms to come through, or are they just general symptoms of Celiac (and if so, why did I not notice them before I was diagnosed!)?

All the best,

Bill.

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Hi Jillian!

Thank's for your really fast response!!

I've been very good to avoid labelled foods that say "Wheat" or "Gluten" on - we're very lucky in the UK that labelling requirements give us that information by law.

What I am not so sure about is fast food - I work away from home during the day, and often find myself having a fry-up (normally Bacon, Eggs and Baked Beans) from the cafe near work - nothing in those that I should avoid, but she does cook other foods - Sausages, Burgers - on the same griddle - could that affect me?

I'm also keen on Indian and Chinese food, and normally have a take-out from one of these once a week - I avoid things like breads, battered or breaded foods that would clearly be wrong to eat, but I suppose I can't count for what's in the sauces or coatings (and I don't ask, I just assume).

At home, we are very good - my family are all able to eat Gluten foods, so we have seperate butter in the fridge and don't share knives when preparing foods, but we do use the same pans, and toaster!

I never thought my gluten intolerance was that bad - although I did get diarreah and cramps, it wasn't all the time - and back then I ate bread and other gluten-rich foods all the time, rarely associating these with Celiac symptoms.

Is it possible that, since starting a gluten-free diet, exposure to gluten is causing my problems?

I work some 17 hour days, and use Caffiene energy drinks to see me through the late nights - I didn't realise that the effects of these could be magnified by this condition.

I did have a "full bloods" test within a month of my diagnosis - all that the consultant told my GP was that it was "normal" - I didn't get a break down of any part of it, but I assume any Anemia or other things I was lacking in would have been identified then?

Cheers,

Bill.

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Hi:

I have asked several questions here, but this is my first time answering one, so I hope you are patient with me too.

I had a simmilar reaction when I went off gluten. Though I felt much better in general, I still wasn

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Welcome to the Forum. It sounds like you have a good start to your diet and good results. But a couple of things do jump out to me. I didn't think you were getting glutened until you said you share a toaster and don't check the sauces on your restaurant food. I played that game for a few months and let me tell you it really wasn't worth it. Mine was an economical necesity but I think you can afford a toaster. You must use your own toaster because it does affect you even if you don't get the D and stomach stuff. The brain fog is a common symptom of glutening. Your fry up sounds fine but request they wash down the grill before they cook yours or at least ask if that part of the grill is used for gluten foods. You do really need to know about the sauces. Gluten is frequently used in many sauces for thickening. Many of us have more severe reactions to gluten as time goes on so you don't want that.

Without a copy of your blood work, you don't know what they tested for. In the US, you will not be tested for vitamin deficiancies unless you ask for each individual one. Your restless leg is probably indicative of magnesium deficiancy. Work up 600 mgs daily for an average adult per Dr. Carolyn Dean. Sublingual B12 can be very helpful for energy and sense of well being. It's done wonders for me. Make sure to use the methyl type.

Keep on doing well. It's a lot to learn at once and I think you're right on track!

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Hi Bill,

I don't have time to read everyone's posts (off to soccer shortly) so I apologize if I am repeating anything anyone else already mentioned. You are definitely getting glutened! celiac disease means that even trace amounts of gluten ARE harmful, including crumbs in your toaster and sharing a grill with gluten-filled foods. You said you were diagnosed with celiac disease but then later in your post called it gluten intolerance. It's a common misconception, but celiac disease is not the same thing as gluten-intolerance and people with celiac disease can't "cheat" or take chances -- we're high maintenance, I know ;)

Even if you don't have GI symptoms (or they aren't severe) you are still causing damage to the villi on your stomach/small bowel lining which is what prevents your body from absorbing the nutrients such as iron, b12, etc., hence the fatigue.

Try going 100% gluten-free, no take-out (if possible), all natural foods for as long as possible. I bet after a month or two your energy levels will soar :) (keeping in mind that healing time is different for everybody from a couple days to a couple years).

GOOD LUCK!

Jillian

Hi Jillian!

Thank's for your really fast response!!

I've been very good to avoid labelled foods that say "Wheat" or "Gluten" on - we're very lucky in the UK that labelling requirements give us that information by law.

What I am not so sure about is fast food - I work away from home during the day, and often find myself having a fry-up (normally Bacon, Eggs and Baked Beans) from the cafe near work - nothing in those that I should avoid, but she does cook other foods - Sausages, Burgers - on the same griddle - could that affect me?

I'm also keen on Indian and Chinese food, and normally have a take-out from one of these once a week - I avoid things like breads, battered or breaded foods that would clearly be wrong to eat, but I suppose I can't count for what's in the sauces or coatings (and I don't ask, I just assume).

At home, we are very good - my family are all able to eat Gluten foods, so we have seperate butter in the fridge and don't share knives when preparing foods, but we do use the same pans, and toaster!

I never thought my gluten intolerance was that bad - although I did get diarreah and cramps, it wasn't all the time - and back then I ate bread and other gluten-rich foods all the time, rarely associating these with Celiac symptoms.

Is it possible that, since starting a gluten-free diet, exposure to gluten is causing my problems?

I work some 17 hour days, and use Caffiene energy drinks to see me through the late nights - I didn't realise that the effects of these could be magnified by this condition.

I did have a "full bloods" test within a month of my diagnosis - all that the consultant told my GP was that it was "normal" - I didn't get a break down of any part of it, but I assume any Anemia or other things I was lacking in would have been identified then?

Cheers,

Bill.

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Bill, I'm also fairly new to "celiac" but I can comment about the fatigue. I am in day 17 of straight gluten containing food eating and I feel awful - creaky, achy, tired, dark circles under eyes despite adequate sleep. As I write, the effects of bread eaten at dinner are hampering my writing - it feels just as you described - a sort of light headedness, and my activities are severely restricted because of the feeling of wanting to pass out.

The good news.

When I do not eat bread (or other hidden sources of gluten), I feel like a different person, like myself. Trust yourself. Your body will give you answers. There is no need to live a "half full" quality of life. The other posters have given good advice. I also am at a stage of disbelief (a crumb from a toaster can make you sick?) as well, but changing to understanding (we are human) and acceptance (we are not alone).

My very best to you.

glutenfree :)

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I don't have time to read everyone's posts (off to soccer shortly) so I apologize if I am repeating anything anyone else already mentioned. You are definitely getting glutened! celiac disease means that even trace amounts of gluten ARE harmful, including crumbs in your toaster and sharing a grill with gluten-filled foods. You said you were diagnosed with celiac disease but then later in your post called it gluten intolerance. It's a common misconception, but celiac disease is not the same thing as gluten-intolerance and people with celiac disease can't "cheat" or take chances -- we're high maintenance, I know ;)

Yes, I must apologise for that - I was diagnosed as Celiac, by blood test and biopsy, but so many people I meet have never heard of it, especially in restaurants or take-aways, that I'll say "Gluten intolerant" or "Wheat intolerant" just so they understand!

Bill.

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