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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....

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

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

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.

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.

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.

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

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

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

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!

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

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

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

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

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

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

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.

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

jenvan Collaborator

Let us know what you find Yvonne....

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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    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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