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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Fm, Fodmap, Elimination Diet?
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tarni    1

After recent negative endoscopy results, and feeling like I'd 'fallen through the medical net' whilst basically house-bound due to the many and extreme symptoms that seem to be shared by others with gluten and other intolerences... I decided to take things into my own hands and for 100% gluten, dairy and soy free. (I have already been meat and egg free for five years as they mess with my female hormones... think PMS 24/7...

Anyway, a week into gluten free I stocked up on fruit and vegies. I felt terrible. Then combined with the fantastic: information, linked-online-resources, advice and experiences on numerous threads from members of this forum re: Fructose Malabsorbtion (FM), low FODMAP diet and elimination diets (much of which seems to be spreading worldwide from the East Coast of Australia)... and combined with my food diary... I decided to do the FODMAP diet aswell. I know it is strongly advised to do this in conjunction with an informed dietician, but I felt both the gastro doctor and my GP had basically shut the door for referals etc.

However, yesterday, my gastro doctor phoned to say my biopsy had tested postive for lactose intolerence, and he has informed my GP to refer me to a dietician. Fab! He also said 'you sound anxious', and (possibly fortunately) I had just had one of my almost daily gut-wrenching vomits which leave me trembling and with a dripping nose. He really started to listen, and didn't treat me like a hyochondriac hippie. I raised FM, and he immediatelty said FODMAP, so he's in the loop... and says he knows a local dietician who could help with this. Double fab!

Just wanting to know, if like pre: blood tests and endoscopy for celiac diagnosis... should I not go on a LOW FODMAP diet pre seeing the dietician? Also, what tests are involved? (I believe it is something to do with breathe tests?)

Any advice appreciated, tarni :)

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gf_soph    36

After recent negative endoscopy results, and feeling like I'd 'fallen through the medical net' whilst basically house-bound due to the many and extreme symptoms that seem to be shared by others with gluten and other intolerences... I decided to take things into my own hands and for 100% gluten, dairy and soy free. (I have already been meat and egg free for five years as they mess with my female hormones... think PMS 24/7...

Just wanting to know, if like pre: blood tests and endoscopy for celiac diagnosis... should I not go on a LOW FODMAP diet pre seeing the dietician? Also, what tests are involved? (I believe it is something to do with breathe tests?)

Any advice appreciated, tarni :)

As someone from Sydney, I have been able to get the benefit of our advanced knowledge about fodmaps - a rare time when we seem to be at the cutting edge!

I found this link through a post about the breath testing on the fructose malabsorption yahoo group http://www.metsol.com/fructose_malabsorption_patient.php

It's about how to prepare and what happens, but it doesn't mention anything about starting the diet before testing. I thought it was worth a look as it mentions quite a few dos and donts before testing.

I saw a dietician who put me on a low FODMAP diet but I never got the breath test done as I had mixed results, I've later combined special diets to get a good result. According to the same website above there is a 5-18% false positive, and there are some people on the group who had a negative test who still really improved on the diet. So there is some similarity with celiac after all!

Re starting the diet, I suppose it depends how long it will take to get the testing done. It may be that the dietician you've been referred to can tell you whether this is a good idea.

The logic to the testing is that if you don't digest fructose properly it travels undigested into the large bowel, where it gets used up by bacteria and gas is produced, which is picked up in breath testing.

My thinking is that if you can get the testing done within a few weeks or so it would be fine to start the diet, as I can't imagine your bacterial population would be rapidly changed in that time. As far as I know there is a fructose breath test, but nothing specifically for fructans. Since you you had a biopsy for lactose intolerance you probably wont need to bother with that breath test.

When you say meat free, do you mean you're vegetarian, or do you still eat fish? If you're totally vegetarian and FODMAP it can be a problem, as a lot of people react to the raffinose in pulses, myself included. I know you're soy free, but I do tolerate tofu well, but not other soy products.

If you haven't seen it already, the yahoo group is great. Also, if you find that you don't improve enough on the FODMAP diet, I've had great success with the RPA elimination diet. As far as I can tell for me the fodmaps tie in with bloating and digestive trouble and possibly irritability. The RPA diet ties in with more systemic things like concentration, brain fog, clumsiness, flushing, crying/depression etc. It's another aussie lead one, but it's worked for me.

Glad you've finally had something useful out of the testing!

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tarni    1

Thank you gf_soph, your information, personal experience and online links, have really helped me through this hazy maze of my own research (...and what to ask, when I see my dietician, and what to expect re possible breath tests... and, I agree, I'm pretty sure a low FODMAP diet won't corrupt results).

So FODMAP and RPAH are dealing with intolerences / allergies from quite different angles, and differnt methodologies / diets. I gather in your two-year-journey you have found ways to combine gluten-free, FODMAP, and now (possibly favoured?) RPAH elimination diet... to make things suit your body.

Its just that FODMAP and RPAH seem to have differences: eg avodado safe in one and not in the other. I'll discuss both approaches with my dietician, whom I will respect for his/her knowledge and experience... its hard for me to relinquish trust to medics, but I will (with a careful eye over everything).

Re vegetarian: I don't eat eggs or meat, but I do eat fish (although right now I'm pretty sick of canned tuna!). I would consider red meat if my health was becoming compromised, but not a chook (chicken). Also, after organic-baked-beans recently made me violently ill, I keeping away from anything like them. :)

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gf_soph    36

It's good to know that it's helpful, glad to be able to help! The thing is that RPA and fodmap are covering totally different things as they deal with different sets of chemicals, so you have to exclude a lot to follow them both. I don't see RPA as a long term diet, just that with both of them I can establish a great baseline to work out how they all affect me and my tolerance for the different groups.

I started off with the RPA diet in October last year. I agreed to eat meat as my dietician wanted to test soy and dairy, and I already couldn't eat legumes. It did not go well, I later realise it's because I have a serious intolerance to eggs and chicken, and can't digest fats and proteins well. I lasted about 6 weeks, but actually got worse.

As the diet didn't work we then tried fodmap, I was hopeful as so many foods I knew were a problem for me were on the list. It didn't work properly either. I then went to an immunologist who suspected insulin resistance, that didn't work, then gastroenterologist for possible crohn's, before restarting the RPA diet in June. So it's been a LONG process!

On the RPA diet I started off on moderate level, found that I react badly to eggs and fats, then dropped down to a strict level. I then found out that rice affected me poorly. I then cut out pears, which was the only allowed fruit but is high fructose. I then felt great! When I did the salicylate challenge (lots of fruits and some veggies) I bloated up severely, very quickly. I realised a lot of those foods were really high in fructose, so I cut those out and the bloating went away. I also accidentally bought a version of my supplement with added inulin, and it really made me feel gross. I did react to the salicylates after about 3 days, but very much emotionally and mentally. It made me realise that the fodmaps really do play a part.

Your dietician will be able to discuss the best diet to start off on. Mine said that how hard you go in depends on how sick you are to start with. Fodmaps are linked in with bloating and other gi issues, and can be linked with anxiety and some behaviour problems. Salicylates, amines, glutamates and additives can link in with almost any sort of problem it seems. For me they seem to link with crushing brain fog and fatigue, exhaustion, irritability and apathy as well as gi problems. It could be that you try out fodmap for a month or two and track any changes. If it doesn't help enough, go for RPA.

If you need any pointers please feel free, especially with RPA as it is hard work. I'm up to day 110, every time I fill out my food diary it feels like a prison log!

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tarni    1

gf_soph, you really made me laugh about the food diary being like a prison log... I hope you don't feel the need to wear an orange jump-suit! Yep, I kind of think 'why do I have to do all of this when others skip happily through their lives' but, hey, like everyone here... feeling better is our aim, and perhaps we appreciate the 'normal' things more.

I took your tip onboard, and joined Yahoo Fructose Malabsorption Australia.

Also, I agree, I think its best to go fodmap first, and then RPA (will obviously discuss with dietician).

I can relate to both: eg I never understood how people could chomp on an apple at morning-tea-break etc without feeling spacey, gassy and with a horrible taste in their mouths (possibly FM related for me). Then again, I have always felt very ill near strong perfumes, petrol, newspaper-ink etc (possibly RPA related for me)

And lastly, I have been relying on avocado as a substitute for butter, and then got kind of hooked on them. My head felt like a bowling-ball that my neck could not support. I cut-out the avocado, and the bowling-ball went.

Lots of things for me to learn :)

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I don't mean for my posting to take you off track, but just want to plant this seed for thought. If you eat a lot of canned tuna, which unfortunately if FULL of mercury, you may have mercury poisoning -which has many similar symptoms of severe Celiac. I've read about many people having this issue following a diet full of seafood: http://www.wrongdiagnosis.com/m/mercury_poisoning/intro.htm

Another trigger for me that I read on your post in the inability to handle odors, etc that don't bother others.

You can do a simple blood or urine test to confirm. I know you can get them online.

Just a thought if you don't find yourself feeling better...sad that we even have to think this way these days :(

BTW, organic meats and eggs do not have the added hormones that can wreak havoc on female hormones.

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tarni    1

I don't mean for my posting to take you off track, but just want to plant this seed for thought. If you eat a lot of canned tuna, which unfortunately if FULL of mercury, you may have mercury poisoning -which has many similar symptoms of severe Celiac. I've read about many people having this issue following a diet full of seafood: http://www.wrongdiagnosis.com/m/mercury_poisoning/intro.htm

Another trigger for me that I read on your post in the inability to handle odors, etc that don't bother others.

You can do a simple blood or urine test to confirm. I know you can get them online.

Just a thought if you don't find yourself feeling better...sad that we even have to think this way these days :(

BTW, organic meats and eggs do not have the added hormones that can wreak havoc on female hormones.

Thank you, I am open to any information/advice, just like your profile name "looking for answers" :)

Re: the mercury in canned fish, yes I have heard of this, and now (thanks to your link) I am very aware of it. However, (I think ) my quite severe and many celiac symptoms began 10 years ago, and it is only in the last couple of weeks that I have resorted to to canned tuna (easy to stock in the pantry when I'm too ill to get out to buy food etc). Anyway, I'm sick of them, I just thought I needed protein as I was getting a bit thin. (I've been eating lentils/cheese etc for protein for many years, but in the last months they go straight through me).

Also, I will search online for information about being intolerant around strong odours (inc blood/urine tests).

And now to the eggs and meat. My female hormones have been a problem since I started my (highly irregular) menstrual cycles at age 14. I have noted that eggs in particular have left me with constant PMS for weeks... but (silly me) I've never really bought my own organic/free-range/non-pumped-with-hormones eggs and seen how I was with them. I may now, as there is not that much left for me to eat!

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Oh, good about not having eaten the seafood for long. That's a relief. Chlorella and selenium are both useful for binding and eliminating mercury if you care to take them, but it sounds like you are safe at this point. I usually will take extra doses if I eat shrimp or salmon, just in case.

BTW, I used to be super sensitive to smells and often had a metallic taste in my mouth. After cleaning up my diet and turning to whole organic foods (for the most part), this has gone away. Years ago I did do a metal test and was okay with mercury but high in cadium. I've been on supplements ever since (selenium and chlorella) and that probably helped as well.

Best of luck to you. You're in the right place for advice and shared experiences. ;)

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tarni    1

Oh, good about not having eaten the seafood for long. That's a relief. Chlorella and selenium are both useful for binding and eliminating mercury if you care to take them, but it sounds like you are safe at this point. I usually will take extra doses if I eat shrimp or salmon, just in case.

BTW, I used to be super sensitive to smells and often had a metallic taste in my mouth. After cleaning up my diet and turning to whole organic foods (for the most part), this has gone away. Years ago I did do a metal test and was okay with mercury but high in cadium. I've been on supplements ever since (selenium and chlorella) and that probably helped as well.

Best of luck to you. You're in the right place for advice and shared experiences. ;)

Thank you (again), especially for the extra information and experience about mercury and metal-tests etc.

Also, sorry if I sounded a bit cranky in my previous post. To be honest, I was a bit... its just that my female hormonal troubles (inc two miscarriages) have been under-estimated and questioned by many for years... and now in recent times... so have the severity of my (now diagnosed... phew!) food-intolerance related symptoms... which have basically shattered my life in the last months. Also, I ate a gluten-free pre-packaged product yesterday, and have been very ill today... so my crankiness was probably already elevated yesterday. No more processed food! I'll try to stick to organic whole foods, but its tricky, as many fruit and vegies seem to also be 'wrong' for my body. But I see a dietician soon, so hopefully I'll get through this maze, and find a baseline diet from which to take challenges etc (with, obviously, the help of members in this great forum).

Again, many thanks. cranky-tarni ;)

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