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Leaky Gut? Help!


Bonnie

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Bonnie Explorer

Hi guys,

Been gluten-free for 10 months now. I still look about 6 months pregnant some days. It looks ridiculous because I'm quite slim.

I avoid all the other things I've been told I have intolerances to - rice, seeds, peanuts, chocolate (well I avoid this as much as possible :), sugar (I use Stevia occasionally), alcohol. I limit my dairy - just milk in tea. I don't have any reactions or symptoms at all with dairy. Processed gluten-free food does NOT agree with me so I avoid these and all other processed foods as much as possible.

So 10 months down the line - when the hell can I expect my stomach to calm down and stop reacting & bloating.

Surely things should have improved by now? I'm feeling so frustrated. :angry:

I ate a packet of gluten-free, sugar-free sweets the other night - I had terrible D for 24 hours afterwards, passed out twice, arms and legs got so sore I could hardly move them, shocking headache. Don't know if these symptoms were due to dehydration or an immune response? I think perhaps the artificial sweetners did it but most of the time I live on fruit, veg, salad and meat. I don't eat any carbs because my stomach just swells up like a balloon.

I don't know where to turn anymore. A GI? Tried that. A Homeopath/Dietitian/Nutritionist? Tried them all.

I'm taking all the right supplements (I hope). PLEASE can someone help?

Yvonne

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jenvan Collaborator

Oh, Yvonne...so sorry to hear how you've been doing. You are in a hard location too for resources... I wish I had more to offer, but here are a few thoughts... Can you give us the ingredients on the sugar-free/gluten-free sweets you ate? I can not tolerate any artificial sweetners...give me stomach upset and gas. How do you know you are intolerant to sugar? Are you consuming a lot of artificial sweetners? If you are still suffering from all the same GI issues, I think you must still be eating gluten or you are consuming something else that is making you sick. Have you ever had periods of time where you felt better? Have you tried keeping a food/symptom journal and seeing if your symptoms are linked to certain foods? Also, what supplements are you taking? And can you give us a typical day's worth of menus for you? Sorry for all the questions!

PS--A thought...I see you mention not being able to tolerate processed foods. An option to keep in mind is the SCD diet....

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Bonnie Explorer

Jen, coming to my rescue again!

I threw the sweet packet away but it had Manitol, Sorbitol and a couple of others. I try and avoid artificial sweetners but every now and again I really crave something sweet.

I was told I was intolerant to sucrose and borderline fructose by the same BEST technician who picked up the other intolerances. Its bio-energetic stress testing. I had actually asked her to check each one of the items because I had noticed symptoms when I ate them.

My typical day is as follows:-

Breakfast:

Sliced Banana with Envirokidz Cereal and Soyamilk (only last few days) or plain yoghurt.

Snack:

Mango or grapes.

Lunch:

Salad (lettuce, tomato, cucumber, sometimes avocado) with gluten-free, dairy-free, sugar-free dressing. Tuna or boiled eggs or leftover meat/chicken from previous night.

Snack:

Banana or apple.

Dinner:

Mixed Veg or Salad with baked potato with butter or fish.

I don't eat protein and carbs together and I eat fruit on its own. I sometimes have nuts and raisins at night. I'm always wanting to keep on eating at night - weird.

I am taking L-Glutamine, Acidophillus, Magnesium, Digestive Enzymes, Multivitamin, Flaxseed Oil Capsules, some homeopathic medicine and of course my herbal laxatives because I just don't "go" at all.

I don't think I'm still getting gluten because my typical gluten symptoms are different. I usually get incredibly sore arms when I've been glutened. These other symptoms are only GI.

I have looked at the SCD diet and it looks incredibly difficult. I am really struggling with my will power right now - craving sweets and chocolate again. The only thing I don't have ANY inclination to try again is gluten! Makes me far too ill.

Am I perhaps just being too hasty? Maybe need to be more patient? I started a food journal this week so maybe that will give me the answers.

Thanks for your help Jen.

Yvonne

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LivingtheGoodLife Newbie
Hi guys,

Been gluten-free for 10 months now. I still look about 6 months pregnant some days. It looks ridiculous because I'm quite slim.

I avoid all the other things I've been told I have intolerances to - rice, seeds, peanuts, chocolate (well I avoid this as much as possible :), sugar (I use Stevia occasionally), alcohol. I limit my dairy - just milk in tea. I don't have any reactions or symptoms at all with dairy. Processed gluten-free food does NOT agree with me so I avoid these and all other processed foods as much as possible.

I ate a packet of gluten-free, sugar-free sweets the other night - I had terrible D for 24 hours afterwards, passed out twice, arms and legs got so sore I could hardly move them, shocking headache. Don't know if these symptoms were due to dehydration or an immune response? I think perhaps the artificial sweetners did it but most of the time I live on fruit, veg, salad and meat. I don't eat any carbs because my stomach just swells up like a balloon.

I don't know where to turn anymore. A GI? Tried that. A Homeopath/Dietitian/Nutritionist? Tried them all.

I'm taking all the right supplements (I hope). PLEASE can someone help?

Yvonne

Hi Yvonne:

Have you ever tried a yeast cleansing program? Bloating, leaky gut and sugar cravings are classic symptoms of yeast overgrowth. I've done it a number of times with some success - kind of a drag though because it calls for temporary elmination of fruit and anything sweet. Good luck to you.

Care

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Nancym Enthusiast
I ate a packet of gluten-free, sugar-free sweets the other night - I had terrible D for 24 hours afterwards, passed out twice, arms and legs got so sore I could hardly move them, shocking headache.

Ow! Sugar alcohols are probably the culprit here. Some of them are very bad. The best of the lot is Erythritol which doesn't give me any gas at all. The worst of the lot are the ones in what you ate. :P

You might want to look into the SCD diet. I relapsed into diarrhea I just couldn't clear up until I started SCD. The goal of this diet is to eliminate the bad bacteria in your digestive tract and only eat things that you, the human, can digest and not send down food for the bad bacteria to thrive on. Unfortunately stuff like sugar alcohols and inulin (aka FOS which might be in your Stevia) is food for the bad guys. Meanwhile you want to repopulate your digestive tract with good bacteria.

The diet is described in the book Breaking the Vicious Cycle and also online at www.breakingtheviciouscycle.info

It is working very well for me!

It does make claims to cure food intolerances which I don't believe. Still, the diet does work marvelously for getting things back under control.

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jenvan Collaborator

Some intitial thoughts...

I threw the sweet packet away but it had Manitol, Sorbitol and a couple of others. I try and avoid artificial sweetners but every now and again I really crave something sweet. I would try and see if you notice any correlation with these?

I was told I was intolerant to sucrose and borderline fructose by the same BEST technician who picked up the other intolerances. Its bio-energetic stress testing. Just looked this up--I think this is what my chirop. did to me several years ago, before I was diagnosed. For me, the information wasn't necessarily helpful. I also had some trust issues with my chiro :) Since I don't know much about it, I would not rely on it solely, but if you have been able to independently confirm the results, then perhaps it has been worthwhile for you. I had actually asked her to check each one of the items because I had noticed symptoms when I ate them.

My typical day is as follows:-

Breakfast:

Sliced Banana with Envirokidz Cereal and Soyamilk (only last few days) or plain yoghurt. You may want to try eliminating dairy and soy for a period of time. Dairy is a very common culprit for others, and quite a few here, including myself have had to eliminate it b/c of the GI symptoms is was causing.

Snack:

Mango or grapes.

Lunch:

Salad (lettuce, tomato, cucumber, sometimes avocado) with gluten-free, dairy-free, sugar-free dressing. Tuna or boiled eggs or leftover meat/chicken from previous night.

Snack:

Banana or apple.

Dinner:

Mixed Veg or Salad with baked potato with butter or fish. Your diet seems to be healthy.

I don't eat protein and carbs together and I eat fruit on its own. I sometimes have nuts and raisins at night. I'm always wanting to keep on eating at night - weird. Are you eating enough during the day? I would be hungry later in the evening if I ate a salad with fish and a potato. Have you tried eating beans, peanut butter, some other carbs? A lack of certain carbs may be making you hungry also.

I am taking L-Glutamine, Acidophillus, Magnesium, Digestive Enzymes (Have you made sure their derivatives are not from foods you are intolerant too—Have you tried not taking them?), Multivitamin, Flaxseed Oil Capsules, some homeopathic medicine and of course my herbal laxatives because I just don't "go" at all. Sounds like you are taking a lot of supplements. Too many can be hard of the system—some vitamins and herbs are especially hard on the GI system. Herbal laxatives—like senna? I would try not to take those very often or over a long period of time—that can definitely be harmful. Have you tried taking psyllium—it is a natural fiber supplement. (I can give more info on that if you want).

I don't think I'm still getting gluten because my typical gluten symptoms are different. I usually get incredibly sore arms when I've been glutened. These other symptoms are only GI.

I have looked at the SCD diet and it looks incredibly difficult. I am really struggling with my will power right now - craving sweets and chocolate again. The only thing I don't have ANY inclination to try again is gluten! Makes me far too ill. The SCD may not be necessary for you—hopefully you’ll figure out the culprit. I recommend it to non-responsive Celiacs, as it has helped quite a few in the category, several here on the boards too. I don’t know much about the yeast issue—some say craving sweets is a symptom of yeast overload. It could also just be a case of depriving yourself of other things, and mentally craving something sweet. If you have been doing a low-sugar for a short period of time, you may need to wait for some of the those cravings to die down. But I think a level of that is normal…eating some chocolate can be therapeutic ;) What symptoms do you notice with chocolate or sweets? Have you tried a dark chocolate, near bittersweet, less sugar than milk chocolate/hersheys? I defiintely eat less sugar than I did. Used to love candy, now I have pretty much no desire for it. Just seems to "sugary"! Give mes a headache.

Am I perhaps just being too hasty? Maybe need to be more patient? I started a food journal this week so maybe that will give me the answers. I don’t think you are being too hasty. I personally categorize most effects of Celiac in two levels—ones that should have a fairly quick response to the diet, ie. D, IMO, and those that take much longer to resolve, ie. Fibromyalgia. If you are still having the same GI issues after 10 mos, with no resolution, you should be “concerned” enough to investigate other causes. I think there's a good chance that food journal will give you some answers. Remember to write it down--even if it seems insignificant at the time.

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sspitzer5 Apprentice

Hi Yvonee,

I just went to my gi guy yesterday complaining of many of the same symptoms. I've been gluten-free for about a year. He said that it could be a bacterial overgrowth in the small intestine. He's scheduled me for a breath test to see if I have this. If so, there are antibiotics to treat it. Maybe this is a possibility in your case? For me, I react most to sugar and carbs.

S

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loraleena Contributor

Are you taking enzymes before meals? This has helped with my bloating.

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Bonnie Explorer

Thanks everyone for the responses.

Jen - I keep promising myself I'll eliminate dairy for a while as it may help with my C which is chronic but I haven't stuck to it because I don't have any GI symptoms from dairy, although saying that, a glass of milk makes me feel a bit iffy. Staying off the dairy won't be a problem as I've cut down a lot - its just a problem going without milk in my one cup of coffee a day and my tea. Its worth a try though. I will start straight away. I had soya milk again this morning and I definitely felt a bit iffy afterwards.

Could dairy be causing me problems without any obvious symptoms?

Jen, I think you may be right about me not eating enough during the day which is why I am so hungry at night. I'm especially not having enough carbs which I believe can cause the sugar cravings. But I can't eat rice at all or any products made from it. My body doesn't digest corn and the gluten-free bread products don't agree with me so the only carbs I eat are potatoes. Beans and lentils make me very very bloated. I was told to stay away from peanut butter because I had aspergillus.

I've looked into the yeast angle and taken caprylic acid on and off. I don't think its a yeast problem but then again I'm very confused! :rolleyes:

I also think I may be taking too many supplements but I'm scared to come off any of them. When I come off the magnesium I start suffering immediately (same day or next) with cramping in my feet and calves. I don't take senna - its too harsh. The herbal laxative is made up of 10 herbs and its the only thing that works although lately I'm having to take 10 tablets a day instead of the 5 I used to take. If I run out of these I stop having bowel movements altogether. I have tried psyllium and it bloats me hugely!! I also have to take double or triple the recommended dosage to have it do anything. This C is a big problem for me because I start feeling really ill and toxic if I don't go for a couple of days.

You know Jen I actually don't have any symptoms with chocolate or ordinary sweets. Yesterday I ate my normal diet, had a big chocolate in the afternoon as everyone around me was eating cake! BUT I had about 5 BM's yesterday and when I got home my stomach was completely flat! It was bloated in the morning. I am so confused!!

I was thinking I hit a jackpot with the Homeopath I am seeing right now. Then he spoiled it all by telling me to try couscous! :( I told him couscous was wheat and he said he knows but its a different kind of wheat and I might be ok on it. I GIVE UP!!

I have tried to get someone to take my C seriously but the GI gave me a prescription for gout medication - apparently it has a side effect that cause D. Have you heard anything so ridiculous in your life? How can you give someone medication for gout when they don't have it?

Apart from these GI problems, my health has improved dramatically since going gluten-free. I used to suffer from chronic earache, tonsillitis, bronchitis etc. etc. I have not even had a cold in the last 10 months. So these GI problems are more irritating than anything else. I also have weight issues so being bloated makes me feel fat which is a problem for me. I am 1.68 metres tall (5 ft 6") and weigh 121 pounds so I know I don't need to worry about my weight.

Perhaps I also need to look into this bacterial overgrowth?

Thanks again for all your help guys. SORRY FOR THE LONG POST!!!

Yvonne

P.S. Loralena - yes I take enzymes before meals and it has helped quite a lot. I notice I am much more bloated when I don't take them.

Yvonne

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aikiducky Apprentice

I just had one thought to add- the food that really makes one feel satisfied and full isn't carbs but proteins. Is it possible to at a bit more meat/fish etc. or do you think that would be to hard on your system?

It's funny, what you eat in a day looks a lot like what I eat! :) I hope you can find more answers soon.

Pauliina

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Bonnie Explorer
I just had one thought to add- the food that really makes one feel satisfied and full isn't carbs but proteins. Is it possible to at a bit more meat/fish etc. or do you think that would be to hard on your system?

It's funny, what you eat in a day looks a lot like what I eat! :) I hope you can find more answers soon.

Pauliina

Hi Paulina,

Thanks for that. Funnily enough, I noticed recently that I feel the best when I'm eating lean red meat twice a day - a bit of mince or a steak. I've never really been into red meat that much but it definitely seems to agree with me lately. Also it fills me up more than anything else. I'm going to stick to that for a couple of days and see how I feel!!

Have a great day.

Yvonne

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Guest Robbin

Hi Bonnie, I hope you are feeling better today. I was curious, though since I had a lot of problems with vitamins/supplements--do any of them have gluten as the starch in the tablets? Also, all of the artificial sweeteners except stevia give me horrible D and dizziness and headaches. Can you eat bananas? I didn't see bananas on your post--bananas and rice for a couple of days usually get me straightened out after an episode. GET WELL SOON!

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Bonnie Explorer

Robbin, you know I just assumed the supplements the Homeopath gave me are gluten free. I will check when I get home. Most of them say starch free. I mostly use Solgar supplements - not sure if you get them over in your part of the world. I phoned them to check and they said they make every effort to make sure their products are gluten free but cannot guarantee there won't be a trace. I don't react to small amounts of gluten though - well not immediately but I do notice it when it builds up!

Yes I eat a lot of bananas - I love them fortunately as they are very easy on my gut. I can't have the rice though! I will definitely avoid all artificial sweetners from now on! :rolleyes:

Yvonne

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Lollie Enthusiast

I was reading through your post and I had a few thoughts. I have a terrible time with C. I ususally get C for a couple of days, then can't stop going and it ends with D. I personally have decided to take nothing. I was on so much stuff before I found out about celiac, I decided when I started the diet that I would not take any meds or suppliments. So far so good. I know that banana's add to the C but I eat them for the potassium. I was wondering if you eat more meat does that help the C? I find the more meat I eat the easier my bowels move. I eat absolutely nothing that isn't natural. I use honey or mollasses to sweeten my food or fruit juices. I find that anything overly processed or artificial wrecks my gut. I also am now drinking water. I like the sparkling mineral water. I try to get my 8 glasses a day, it seems to help with the C. I also eat chocolate, bittersweet, alot. I crave it, and dark chocolate! I think that the cure to all ailments will eventually be found in chocolate! :P

I don't know if any of that helps, but that's a few things I have done and could really tell the difference! :rolleyes: I hope you are feeling better, and good luck! :D All of this can be confusing and tricky, but I have to believe in the end it will be worth all the trial and error!

Lollie

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Bonnie Explorer

Hi Lollie,

Your comment about eating more meat is interesting. The few times I have tried to eat more meat I have felt great - lots of energy. Didn't notice any difference in BM's but I am going to try it again!

I drink a lot of water and have done for the past 10 years. In fact I used to drink too much water and ended up with dehydration. I drink about 3 litres a day which is still a bit too much but I am thirsty all the time - even wake up during the night to drink. It does nothing for my C though. I also like the sparkling mineral water but the gas bloats me. Like everything else :)

Have a great weekend!

Yvonne

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Lollie Enthusiast

Have you been tested for diabetes? I know that thirst, and thirst like what your talking about, at night, can sometimes be a symptom. I hope you are able to get some relief. I know how uncomfortable it is to have things not working properly!

Lollie

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jenvan Collaborator

Jen - I keep promising myself I'll eliminate dairy for a while as it may help with my C which is chronic but I haven't stuck to it because I don't have any GI symptoms from dairy, although saying that, a glass of milk makes me feel a bit iffy. Staying off the dairy won't be a problem as I've cut down a lot - its just a problem going without milk in my one cup of coffee a day and my tea. Its worth a try though. I will start straight away. I had soya milk again this morning and I definitely felt a bit iffy afterwards. What I will say on dairy... I never had any real GI symptoms...I could get away with eating dairy. However, when I did the food journal and started watching patterns, I noticed a delayed reaction of constipation. So dairy could be causing you issues down the line that do not appear immediately. That was true for me. PS--Saw the mention of bananas. I know they can sometimes loosen stools, but I know several folks that bananas constipate. :( It might be worth a try to eliminate them for a bit and see what happens. PS--Soy milk tears me up. I can do rice though. You may not have it near you, but I've heard of the one made from potatoes here...

Jen, I think you may be right about me not eating enough during the day which is why I am so hungry at night. I'm especially not having enough carbs which I believe can cause the sugar cravings. But I can't eat rice at all or any products made from it. My body doesn't digest corn and the gluten-free bread products don't agree with me so the only carbs I eat are potatoes. Beans and lentils make me very very bloated. I was told to stay away from peanut butter because I had aspergillus. Have you tried quinoa or tapioca products instead of rice or corn? Or you could try some of the SCD type breads that use nut flours. Are you supposed to stay away from all nuts?

I've looked into the yeast angle and taken caprylic acid on and off. I don't think its a yeast problem but then again I'm very confused!

I also think I may be taking too many supplements but I'm scared to come off any of them. When I come off the magnesium I start suffering immediately (same day or next) with cramping in my feet and calves. I don't take senna - its too harsh. The herbal laxative is made up of 10 herbs and its the only thing that works although lately I'm having to take 10 tablets a day instead of the 5 I used to take. If I run out of these I stop having bowel movements altogether. I have tried psyllium and it bloats me hugely!! I also have to take double or triple the recommended dosage to have it do anything. This C is a big problem for me because I start feeling really ill and toxic if I don't go for a couple of days. What type of pysllium were you taking? I had issues with the brand I used to use. Found a great one now--it also has licorice and hibiscus--which is a big helper. Let me know what kind you used or what was in it. If I was you, my main goal would be to eventually get off the herbal laxatives. Herbal laxatives, when I have taken them, gave me an unsettled, gassy system.

You know Jen I actually don't have any symptoms with chocolate or ordinary sweets. Yesterday I ate my normal diet, had a big chocolate in the afternoon as everyone around me was eating cake! BUT I had about 5 BM's yesterday and when I got home my stomach was completely flat! It was bloated in the morning. I am so confused!! Huh, sounds like your system kind of purged itself. Perhaps the sugar got you going? Food journal might be good hear to help detect a pattern. Oh, were you able to find gluten-free makeup and products for yourself in SA? Was remembering to a while back...

I was thinking I hit a jackpot with the Homeopath I am seeing right now. Then he spoiled it all by telling me to try couscous! I told him couscous was wheat and he said he knows but its a different kind of wheat and I might be ok on it. I GIVE UP!! Oops! Well, at least you got to set him straight :) My philosophy with doctors, natural or not, is to be open-minded but always do my own research and evaluate what they are saying or suggesting...then always make my own decision. Seems like you're trying to do that.

I have tried to get someone to take my C seriously but the GI gave me a prescription for gout medication - apparently it has a side effect that cause D. Have you heard anything so ridiculous in your life? How can you give someone medication for gout when they don't have it? Jeez! Nothing shocks me now-a-days. I think it was Karen who also had an unnecessary med prescribed for her to help slow her bowls down. ? I know some docs feel that it is normal for some people to only have a BM every few days. I am a believer that ideally, we should go everyday at some point. Our bodies can only hold so much :) And as you mentioned...if its sitting in their long enough...it can release undesireables back into our system. I'm surprised he didn't recommend zelnorm.

That is interesting about the excessive thirst too. Might want to investigate that further 3L is a ton! Diabetes symptoms: Open Original Shared Link

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frustratedneicey Apprentice
Hi guys,

Been gluten-free for 10 months now. I still look about 6 months pregnant some days. It looks ridiculous because I'm quite slim.

I avoid all the other things I've been told I have intolerances to - rice, seeds, peanuts, chocolate (well I avoid this as much as possible :), sugar (I use Stevia occasionally), alcohol. I limit my dairy - just milk in tea. I don't have any reactions or symptoms at all with dairy. Processed gluten-free food does NOT agree with me so I avoid these and all other processed foods as much as possible.

So 10 months down the line - when the hell can I expect my stomach to calm down and stop reacting & bloating.

Surely things should have improved by now? I'm feeling so frustrated. :angry:

I ate a packet of gluten-free, sugar-free sweets the other night - I had terrible D for 24 hours afterwards, passed out twice, arms and legs got so sore I could hardly move them, shocking headache. Don't know if these symptoms were due to dehydration or an immune response? I think perhaps the artificial sweetners did it but most of the time I live on fruit, veg, salad and meat. I don't eat any carbs because my stomach just swells up like a balloon.

I don't know where to turn anymore. A GI? Tried that. A Homeopath/Dietitian/Nutritionist? Tried them all.

I'm taking all the right supplements (I hope). PLEASE can someone help?

Yvonne

I would bet that it was the artificial sweetener that got to you. It does the same to me. You even have to watch sugar free gum.. Many of these foods contain sorbitol, which is a laxative. Nice.....no wonder sugar free makes you skinny, it makes everything run right through you!!!!!!

Denise

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megsylvan2 Apprentice

I'm new here, so I know next to nothing, compared to the others here. But your diet looks just like mine - pared down to the bare bones minimum. The only thing different is I discovered eggs were bothering me, which is why most wheat-free/gluten-free products that are made with eggs still cause problems for me.

And I cut out the dairy. Instead, for breakfast I will have wf/gluten-free millet toast (no eggs) with almond butter and a homemade fruit smoothie, which is very filling and soothing.

In the evening, I have the same issue with wanting to keep eating snacks and goodies (which is probably what brought me to this point in the first place), so I've done a couple of things to combat that. If I am really in pain, and don't think I can tolerate eating anything, I will have a small piece of crystallized ginger. It satisfies (a little bit) the desire for sweet, but because of the bite of the ginger, I can't eat too much of it.

If I can tolerate eating, I have another fruit smoothie (made with frozen fruits, rice or almond milk and sweetened with a bit of frozen fruit concentrate). It is delicious and filling, and seems to stave off the snack parade.

If I am doing well, I've also discovered I can tolerate Cracker Jacks, and that somewhat satisfies a need for a sweet snack.

I've also found that when my insides are all inflamed and swollen, I really can't tolerate vitamins, pills, and medications, so I just stop them for awhile till things calm down. I've found that my Lipitor really bothers me, so I'm wondering what is in it?

The elimination diet is the only way I discovered specifically what was bothering me. It's a pain, but it's the only way I can feel well, and it is worth it.

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Bonnie Explorer

Thanks everyone for your advice!

I am on the second week of the food diary - had a bad week last week but I ate a lot of rubbish. New start today.

I went out and bought 2 books the weekend. Don't know if you get the TV program "You are what you eat" over there? Its by a Dr Gillian McKeith. She's a Holistic Nutritionist. I bought her books and am starting her meal plan today. She only believes in eating whole foods - loads of fresh veggies and fruit. The first 8 weeks you can't have dairy. Her recipes are delicious - and all extremely low fat and healthy. She even has some incredible sweet things and puddings. Everything is natural.

I also bought a juicer to make vegetable and fruit juice. I'm on a mission :D The doctors can't help me so I'll have to help myself.

Feeling very positive again.

Jen I'm not sure about the psyllium I tried. It was from the health store and was just a brown powder. Don't know what else was in it. I bought some Aloe Vera juice to drink twice a day - apparently that can help with C. I agree that I need to try and come off the herbal laxatives.

I am still going to look into the diabetes thing though. I know its on my mother's side of the family.

Yvonne

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jenvan Collaborator

Let us know what you find Yvonne....

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Lollie Enthusiast

I'm glad your feeling better! :D I think attitude helps alot! Please let us know how your doing and what you find out!

Lollie

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      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
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