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Member Since 21 Nov 2007
Offline Last Active Apr 26 2013 01:24 AM

#709035 New Here

Posted by on 15 June 2011 - 03:20 PM

Hi there, my names Helen, im 42 and live in the UK. Ive just been told by my doctor to try a gluten free diet for a while. For over a year now ive had what appeared to be IBS , recently it seems im becoming more and more intollerant to food. I cant eat burgers, sausages etc as they give me a bloated stomach and terrible pain. Other foods bloat me and make me uncomfortable like potatoes, chips, apples, fruit juices etc. Some foods just bloat me without making it too uncomfortable, like ice cream! It literally takes minutes to happen and after meals i end up looking pregnant. It just seems more and more foods are doing it! I did try gluten free bread and it was much better. There are very few foods that i can eat without a reaction. Can anyone offer any advice, thanks, Helen x

hi Helen. Welcome to the celiac.com forum!

Its likely very worth it for you to try out eating gluten free. The best gluten free diet, especially initially, is to eat veggies, whole grain rice, meat and water.

You have to avoid what is called cross contamination (CC) from gluten to really get the full benefit. It may also be that you are suffering from leaky gut syndrome caused by damaged villi (usually damaged by the gluten). It takes a while to heal--so meantime its wise to stay off milk products.

You should also replace your cutting board, toaster and any food implements you use that is made of wood in order to avoid more CC. If you have a wooden table, get a table cloth. I replaced my plastic table mats too. Your oven and iron pots should be put through the self cleaning cycle to get rid of trace gluten. I also found it best to avoid gluten in make up and lip gloss as well as in various soaps, cleaners and toiletries, not to speak of certain building materials like pre-mixed plaster.

There is a host of information on the board here. Just search whatever subject you want. There are also lists of trace gluten chemicals and food additives etc. found in foods listed in the info section that you should find useful.

If you don't get relief, consider going on a fast for a few days and reintroduce foods slowly one at a time every 2 days or so. Keep a journal so you can note how you feel. I found it helpful to take my pulse too (the Coco pulse test) to get even more info.

Avoid sugar, again especially at first, and especially given you have so much bloating. It could be candida overegrowth or some kind of bacterial dysbiosis which sugar feeds.

For me I found I also have salicylic acid sensitivity, which is a whole other story. Being sensitive to aspirin is a big clue for that one. Other common sensitivities are corn, soy, casein, coconut, the tomato/potato family. Some too have to be careful of pre-made gluten free flours since there can be very trace CC going on.

Good journey to you! I am betting you will find relief very soon.

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#707892 Elemental Diet - Hypoallergic Protein Free (Hospital) Formula

Posted by on 11 June 2011 - 07:06 PM

Welcome to the forum!

Your proposed diet sounds interesting. I don't know how many here go off protein to get better. I know for me it would not work. Which is not to say it wouldn't work at least for a while for you and others. Eventually however you would likely need to eat some protein just to be healthy and not fall apart.

It may be that some types of protein are better for you than others, and vice versa with those that are difficult for you to metabolize. Pancreatic digestive enzymes might be in order, especially at first. Taking good enterically coated probiotics can also be a big help.

Many here find that if they eat some basic whole gluten-free grains (like cooked whole brown rice) with some meat and lots of vegetables with no sugars added, it really helps.

There are those here who go off all grains. There is the specific carbohydrate diet--which is one type of grain free diet. Another is the Paleo Diet. I have tried both. Certainly they are a great way to also lose weight! However for myself I eventually discovered I had to go off high and medium salicylic acid foods to be healthy--SA is in a huge list of foods and herbs that you can find out more about on the internet.

Many find they have multiple food sensitivities and allergies--since with celiac or severe gluten intolerance one usually develops leaky gut syndrome and thus often a multiplicity of sensitivities going on. Lactose, casein, soy, corn, or even aged food are often likely culprits--as well as sugar. Candida overgrowth or bacterial dysbiosis can also be a factor.

Gluten sensitivity is at least a potent contributor for most auto immune conditions it appears. Have you read Dangerous Grains by Braly and Hogan?

If you don't have salicylic acid sensitivity, or need to be on a specific carbohydrate diet, you might find that taking marshmallow root will help soothe and heal your gut more. Dandelion root can be very detoxing, which often is necessary when one has a lot of inflammation. Both seem to be safe for celiac since they are not immune stimulants.

For myself I find eating a lot of greens plus taking chlorella tablets really helps. Parsley is also very detoxing and refreshing for most of us. Its great in a vegetable smoothie.

Exercise of course is key as well as drinking lots of water. And nowadays, avoid radiation as best you can.

Let us know how your experiment works for you.

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#705315 Ideas On What The Problem Might Be ?

Posted by on 03 June 2011 - 08:27 AM

The smoothies, or something in your kitchen.

Is the coffee safe ? Most of the time it is not the ingredient, it is what happened to it on the way to your lips.

A lot of the Kind bars, which are otherwise delicious, have soy in them now. :(

Just from the top of it I would suspect the cran/grape juice--and the cranberry with other acidic fruits like oranges or strawberries.

Personally I would simplify your fruit intake to just one kind of fruit at a time until you get to the bottom of this.

It could also be the quantity of the fruit that could be the problem.

I doubt its the eggs since you had several meals with eggs and had no problem--though you never know, it could be a food combination problem or a delayed reaction--or a food allergy to eggs when you have eggs more than say two or three times a week, with a day or two in between. I have had food sensitivities like that--where things are OK if I don't eat them too frequently, but are a problem if I eat them nearly every day.
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#703746 Grr...

Posted by on 29 May 2011 - 10:43 PM

am the same way. will be 62 soon! but still young in many ways. Young or old, having an open mind or not seems to be a personal rather than a generational decision.
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#703649 Grr...

Posted by on 29 May 2011 - 04:51 PM

Unfortunately the level of denial in many celiac or severe gluten intolerant families often is astronomical. It often takes a lot for someone to begin to notice the relation between health and what they eat, especially something as extreme as what we have to do to be healthy. And many, after seeing "us" and what we go through, don't want to be bothered. They worry about travelling, social outings and the like, and often say they don't have it as bad as we do, assuming they even acknowledge the problem at all. Some even do get tested but it often comes back negative (given the degree of difficulty of getting a positive endoscopy--which unfortunately still is the AMA's yardstick) even though its clear they actually have a problem and feel better without gluten.

So I don't entirely blame them although it is frustrating. My family actually now tends to bait me about it-- so basically I now stay just away and change the conversation if I do happen to speak to them. I think they are all kind of messed up in their brains due to the gluten intolerance--and there is not much more I can say. They will change their minds if and when they want to.

If more people who have this condition acknowledged it and lived the life, things would be easier for us, i.e., more set up across the board, like they are in Europe rather than how they are here in the States. As is we have a long way to go. But then for us here in the States it hasn't been that long that this gluten problem has been acknowledged at all for the severity (and commonality) of problems it actually causes.
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#692089 Diagnosed With Fibromyalgia Today!

Posted by on 13 April 2011 - 10:44 PM

It sounds like you are doing a lot of good things. I can understand however how all those treatments can really add up. I personally spent a fortune on all kinds of healers and massage etc. The thing to do is to try and get at the bottom of what it is that is going wrong. The problem with fibro however is that the causes for it are diverse and difficult to pin down.

Nevertheless, I also want to add its important to remember that you probably haven't been completely off the gluten that long, if the signature info you have is correct. Many here have fibro symptoms, but experience them lessening or going away after a while from being completely gluten-free.

Make sure you are getting enough vitamins and minerals and things like omega 3's balanced with the other needed oils.

Maybe take nattokinase to reduce swelling and scar tissue--important for aiding the damaged villi as well as helpful for fibro symptoms. Some find taking pancreatin with meals (esp. with protein) helps at first. Bromelain/papain are also helpful for reducing inflammation and digesting your food better unless you are like me and are allergic to them. Dandelion root tea can also help reduce inflammation and toxicity. Magnesium can be important too, esp. if you have constipation.

Taking co-enzyme B complex has helped me enormously. The body tends not to absorb B vitamins very well esp. at first while you are still healing your damaged villi. B's are essential for many functions of the body, including the nervous system. The co-enzyme B's go directly into the blood stream if taken on an empty stomach.

I have found silica drops to be of enormous help. It helps build collagen, essential for healthy joint function.

I also am sensitive to salicylic acid (SA)--found not only in aspirin but also in many fruits and vegetables and herbs--especially the skins. Reducing the SA load has greatly reduced joint/muscle/nerve problems I have had chronically for years. If your problem is severe, consider SA or some other sources of possible sensitivity.

Exercise and meditation (usually not at the same time unless its hatha yoga) are also really important. They both change your body chemistry, usually for the better. I personally like walking a lot. Just go at it slowly, and gradually work your way up...

Good luck!
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#688257 Need To Vent, Shoulder To Cry On And Everybody

Posted by on 30 March 2011 - 04:09 PM

I agree. It really is unfortunate especially since you have a business together. But if you want to be healthy and happy it looks like you can't be with that guy. You are after all driving in close proximity of each other. And the fact he CC's your food by using your cookware is unforgivable given your condition.

I had a love in my life that was like that. He basically thought this whole gluten thing with my cross contamination reactions was nuts. But for me it was a survival issue.

It is so hard when you feel the emotional attachment with someone you otherwise are so close to. But you have to love yourself first.

If you keep getting CC'd it will not only give you headaches etc. it can cause more serious breakdowns for your health. Cancer, other auto immune diseases, thyroid, diabetes etc. etc.

This guy may actually love you in his way, but he is poison for you. Face it. There are no easy answers, but you will feel infinitely better not being with him.

Maybe you can still be phone buddies, but face it, close contact is out unless by some miracle he decides to change and be willing to do the work to get outside his comfort/habit zone.

There are other guys out there who are a lot more loving and considerate, believe me. You might think they don't exist right now but they do. They may in fact wish they were with someone as wonderful as you.


PS--getting constantly glutened like that does not bring out the best in anyone. Think of the Vikings eating moldy rye bread before battle and you will get the appropriate image. It doesn't exactly make for calmness. But it really isn't your fault. Bottom line.
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#687957 Glutened And Frightened

Posted by on 29 March 2011 - 10:52 PM

I am so glad to hear the worst of it is over for you. Writing here was and is a good choice. Keeping a journal can also really help. So often gluten affects the brain. Creates anxiety and weird perceptions. I grew up with this as a common occurrence. The thing is to not be afraid if that is possible. Deep breaths. My parents were anthropologists so I grew up knowing that shamans are a natural part of every society. It made me realize there is a purpose for sensitives like us. We don't have to go down the path of fear if we choose not to.

Drinking some water with baking soda helps me. Also eating plain yogurt. Or make a veggie shake of things like parsley, celery, cabbage etc. to clear the brain. Dandelion tea also helps detox the liver.

Obviously don't drive or operate complicated machinery. If you are not allergic to pineapple or papaya, eat them if they are around. Or take some papain/bromelain capsules.

Avoid sugar...

When able, go for a walk, take a sauna, get some exercise to get it out of your system.

Hope you feel better soon!


PS--check out this link on the connection of gluten and candida that another poster sent out earlier today. It talks a lot about gluten etc. affecting the central nervous system. http://www.denvernat...ews/celiac.html
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#686041 Things To Help Digestion?

Posted by on 23 March 2011 - 09:41 AM

Pancreatin and/or papain/bromelain helps many with celiac with digestion, especially at first. Sometimes a good plant enzyme mix is helpful. I never responded well to the really heavy stuff however since I did not need extra hcl etc. Avoiding milk products except for plain yogurt also helps. I make my own yogurt and ferment it for 24 hours rather than the usual 6 or 7. That way it gets rid of all the lactose.
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#685772 Neurological Symptoms From Intolerances

Posted by on 22 March 2011 - 10:44 AM

I too react to almonds (and other nuts) neurologically. For me it is the high salicylic acid (SA) content in them that bothers me, like what eatmeat4life suggested. Am hoping for your sake that you don't have a SA response like I do. However if almonds and other nuts continue to be a problem for you, its definitely something to check out. Alternatively it could be an allergic reaction to that specific nut, or CC as previously suggested.
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#685643 Negative Changes With Methyl B12

Posted by on 21 March 2011 - 11:05 PM

Does the jarro B12 sublingual contain sorbitol? I found I react badly to things with sorbitol. Maybe you do too?I take country life co-enzyme B complex instead. It goes directly into the blood stream. It has a balanced mix of B's including B12.
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#684656 Need A " Pep Talk"; Very Discouraged And In Pain

Posted by on 18 March 2011 - 11:12 AM

Hi Irish Heart,
I am sorry to hear you are still suffering so much, but like the others said here before me, it will pass in time once you find the right track.

I was ill for so many years I don't care to recall it. but now here I am age 61 and feeling better than ever overall though I still have my down days like yesterday after I had half of a papaya the night before...which was actually a big clue since i also react similarly to bananas.

Am wondering if you are having any success going off the salicylic acid? I am also now off amines too. Both banana and papaya are high in amines. Apparently it is not that uncommon for someone to be sensitive to both salicylates and amines. Itchy bitchies plus not sleeping seem to go together for me. I took benedryl and now am resolved not to eat amines as much as is humanly possible.

My friend Graeme I just mentioned to you yesterday is very sensitive to casein.
He is doing better today by the way. Thanks so much for your telling me of your experience. It reminds me actually so much of what I went through too--ending up having to go off thyroxin after I had gone off most gluten (I was on a cave man diet at the time).

It seems the ashwagandha, extra B vitamins, 5HTP, and magnesium plus dandelion and chicory root tea are all helping Graeme's adrenals normalize and his body to detox. The 5HTP helps with sleeping better by the way. Healthy adrenals are necessary for healthy thyroid function. Without them being up to snuff (even by just a little), it makes taking the thyroxin toxic.

The other thing that has been helping Graeme sleep a little better is hypnotherapy and EFT (Emotional Freedom Technique). The psyche can and does interact with the body. Its kind of like the chicken or egg question, both are necessary for healing.

Hang in there meanwhile. Even if you can't do physical yoga, you could meditate and get a lot out of it. Perhaps getting one of those meditation disks with soothing sounds could help transport you into a more peaceful healing place especially important when you you are having a difficult day.

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#684391 What Are The Odds I'm Pre-Diabetic?

Posted by on 17 March 2011 - 11:54 AM

I agree and I think your system is correcting itself. Erratic blood sugars are common, I have read, with celiac and perhaps, you are leveling off now that you are gluten free! Go with yolo's suggestion.. the dandelion tea will help clear the liver. :)

My glucose levels used to go up and down. My thyroid panels do too...but now, they are "normal" (hooray) No meds. My sister has type 1 diabetes and I have used her meter to check myself and I am okay, too...but it is wise to watch ourselves, nonetheless. :)

A blood test, when you can afford it, may put your mind at ease!

Hi Irish heart. Nice to know I gave some good advice.
Meanwhile I would like to ask you about your experience with your thyroid. My friend Graeme right now is "crashing'. He's taking levothyroxin and still can't sleep, is subject to the cold, has constipation, exhaustion but can't sleep, brain fog etc. though he is quite thin. I figure he's having trouble with his adrenals. We had him take a bunch of tests for his thyroid recently which he should get results of next week.

He has celiac too which makes me wonder about the whole thing, if maybe this crash is in part due to his not needing to be on so much thyroxin. However I also think the low adrenals are getting in the way of converting T-4 to T-3 and thus creating a toxic condition.

What seemed to set it off was both the cold weather and his being on a severe anti candida diet. He stopped eating all grains and squash except for zucchinis. I convinced him this was bad for his health. He is doing a little better now that he is eating some rice each day and now has added lentils to his diet. However he still is in a crisis.

Any insights as to what to do meanwhile? Am wondering if he should go see a functional medicine doc. instead of the county doc he usually sees... This has been going on for far too long.
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#684346 What Are The Odds I'm Pre-Diabetic?

Posted by on 17 March 2011 - 09:07 AM

My brother has type 1 diabetes. Several other family members have type 2. I have noted for several years now that sometimes my urine smells like pancake syrup. I asked my brother and he said he had never noticed his urine smelling sweet but his nose isn't the best. I had tried googling it about a year ago and found no information. Just now I googled and found info which says I should be concerned

"Sweet smelling
Catching a whiff of something sugary sweet after you pee might actually be a clue to something very serious going on in your body. ďA sugary smell might indicate the presence of blood sugar thatís being excreted in the urine,Ē says Farber. And a high concentration of blood sugar in the urine is one sign of diabetes. The kidney acts as a filter for all sorts of waste that flows through the body. But if your filter is damaged, things can leak out of it and end up being excreted in the urine. In the case of diabetes, excess blood sugar sneaks out through a leaky filter and shows up in the urine. If you are pregnant, changes in the kidney filtration system can result in the presence of sugar in the urine. Whether pregnant or not, if a doctor finds sugar in your urine, he or she should order further tests to determine if diabetes is a concern."

I haven't smelled the sweet smell since going gluten-free. Should I still be concerned? Do I need to ask my Dr to run a test? If so what?

P.S. I have no insurance.

sounds like being gluten free is good for you and may be turning this around. I would also of course NOT any sugar or maple syrup, honey etc. Might try the cave man or paleolithic diet at least for a while just to make sure you really improve. Dandelion root tea might also be a good idea.

It wouldn't be bad for you to get your blood sugar tested however just to see what the stakes are. Maybe go to a county hospital? Sometimes they have a program that costs way less for those of us who can't really afford to see a doctor...
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#682817 Question For Old Timers

Posted by on 12 March 2011 - 01:00 PM

that's great news. I took your advice on the last post and eliminated trace gluten. In fact, I'm entirely on meat and veges no processed foods at all (almost) and like you, the heart palpitations stopped. I'm so glad, that whole two weeks or so was scarry! I don't know if I'm a true celiac or not but I hate gluten so much that I will never consume any ever again knowingly! I have heard that to get a diagnoses I will have to start eating gluten for testing purposes? Or get a biopsy of sm intestine?

Am glad to hear your heart is quieting down and you are feeling so much better!

Yes, I do no processed foods at all. It takes the guess work out of it plus actually is so much healthier. Its much like the cave man diet.

For myself I was able to finally add in most gluten-free grains except corn, soy and coconut (or any seeds of nuts) after I discovered I have salicylic acid (SA) intolerance. Go figure on that one! SA limits my diet since many fruits and veggies and most herbs/spices have high amounts of SA in them--but then it also broadened it too with the addition of grains and a few fruits (which it seems I still need to cook or I react). Reason I mention the SA is that sometimes people with nervous system problems have it too in addition to the gluten--esp. if you continue to have a white tongue in the morning and a slightly distended belly (and its not candida overgrowth).

For your own peace of mind (as well as to convince docs and relatives) you still could have tests done at this point for gluten sensitivity. Testing a stool sample through Enterolabs I have heard is the most effective as well as least invasive. Its more cutting edge but likely will become more recognized by the AMA as time goes on. My belief is that you would have to be off all gluten for at least three months before the stool test would be ineffective. Am I right guys??

For me I was diagnosed as an infant (after I stopped growing and developed pneumonia at age 4 months after being introduced to grains) and then in the fall of 2007, after I went off all trace gluten and rediscovered that I have celiac. I found I was so sensitive it wasn't worth testing. I knew from my reactions--and didn't want to get severely ill again (which I did from CC initially--getting both pneumonia and a bad kidney infection--and probably would do so again given how I started to react badly recently to trace gluten since my lungs started to get raspy again as well as the migraines, D etc.).

However I do have relatives that think I am just making this all up even though my health improved greatly so that I no longer get constant flu, colds. bronchitis, bladder and kidney infections, heart palpitations etc. I also have wavy hair with body rather than thin straight hair, thicker nails, reversed osteoporosis etc. Without going into a huge litany (which hasn't worked with them by the way) I just tell them that I don't have to convince them. I just need to take care of myself and leave it at that.

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