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flowerqueen

At the end of my tether - intolerant to nearly everything!

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Since being diagnosed Coeliac a good few years ago now, I seem to have become to intolerant to so many things.  At first I just experienced the usual withdrawal from gluten, which took about 6 weeks.  Then came intolerance to soya (where I had really bad IBS, including really bad stomach cramps).  I had already become intolerant to dairy before being diabetic with coeliac disease. Followed by things like xanthan gum, and other additives, Quinoa and a product called Quorn, which is a meat substitute.  The latest thing to crop up seems to be fructose. I've eliminated all these things from my diet, but started with bad stomach cramps again, 10 days ago, which in the last few days has been accompanied by bad nausea and fatigue.  On Saturday I just ate gluten free bread - toasted and started to feel a lot better. I ate my dinner as usual last night, including a chocolate brownie (gluten free obviously) now wondering if I have a problem with dairy free/gluten free chocolate as well;  by bed time I was as ill as ever.  It's getting to the stage where I am scared to eat anything, as the stomach cramps get really bad after each meal.   I'm at the end of my tether and can't remember what it feels like not to feel ill with something.  I'm just reading a Low FODMAP book at the moment, but it's all getting a bit overwhelming. I've re-commenced my food diary. Any ideas please?

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Sorry you are suffering so much. Have you been back to see your doctor? Maybe there is something going on that isn't food related. You should at least have a panel run to make absolutely sure that gluten isn't slipping in somewhere. I hope you get some relief soon.

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Hi :) 

2 hours ago, flowerqueen said:

I've re-commenced my food diary. Any ideas please?

Have you come across the AIP diet? 

http://www.saragottfriedmd.com/is-the-autoimmune-protocol-necessary/

I've not done it myself, I've been thinking about it since I realised my dairy issues were more serious than I'd previously realised. It does seem to have good evidence behind it although it looks difficult to do. 

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Can realky relate. Before diagnosis i could eat almost anything. Silent Celiac. After gluten-free everything bothered my bowel. Took years to eliminate my diet down to 10 items. No multiingredient foods. After 7 years i am able to add more things. Some seem forever bad, beans of all kinds, choc,coffee,soy,etc. Found i have mthfr gene so body does not accept foilic acid foods. Checking on more. Magnesium foods go right through with cramps. Thought dairy was out but great on 0% fat greek yogurt plain. All citrus is out. Drs have no understanding. I meet others like me here and no longer feel abnormal. Hope you can start from few ok items and add on. Maybe time made me less sensitive to some. Also my stool had no bifda si orobiotics with high bifida helped me digest comfortably. Hope this share helps you find answers. Hang in there.

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When my digestive system seems to go through a bad period, I start eating rice with everything. I take my time chewing it to make sure I'm helping my stomach digest, this always seems to calm things back down.  I'm wondering if the Macrobiotic diet would be good for you?  It's a tough diet in our western culture, but it might be worth it. There is a book called " Becoming Whole"  written by Meg Wolff. You will find that her struggles are with different cancers, but it's still a great educational book on diet and "becoming whole" 

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3 hours ago, flowerqueen said:

Since being diagnosed Coeliac a good few years ago now, I seem to have become to intolerant to so many things.  At first I just experienced the usual withdrawal from gluten, which took about 6 weeks.  Then came intolerance to soya (where I had really bad IBS, including really bad stomach cramps).  I had already become intolerant to dairy before being diabetic with coeliac disease. Followed by things like xanthan gum, and other additives, Quinoa and a product called Quorn, which is a meat substitute.  The latest thing to crop up seems to be fructose. I've eliminated all these things from my diet, but started with bad stomach cramps again, 10 days ago, which in the last few days has been accompanied by bad nausea and fatigue.  On Saturday I just ate gluten free bread - toasted and started to feel a lot better. I ate my dinner as usual last night, including a chocolate brownie (gluten free obviously) now wondering if I have a problem with dairy free/gluten free chocolate as well;  by bed time I was as ill as ever.  It's getting to the stage where I am scared to eat anything, as the stomach cramps get really bad after each meal.   I'm at the end of my tether and can't remember what it feels like not to feel ill with something.  I'm just reading a Low FODMAP book at the moment, but it's all getting a bit overwhelming. I've re-commenced my food diary. Any ideas please?

...Umm yeah I got Ulcerative Colitis a few years after celiac DIA. it flares up with bloat, gas, distention, common ones for most people are dairy, soy, gluten and in my case I get flare ups with sugars glucose, fructose, and carbs...sometimes spices. I am also allergic to corn lol. Intolerance to a whole list of things like peanuts, soy (lectin is fine everything else is vomit comet), dairy (for over 15 years now?), xantham gum in all but the tinniest amount in one supplement....if in anything else I am vomiting in a hour....recently had some odd ones crop up after some CCed and glutened twice in the past few months.....heck I just had a anaphylactic allergy to god knows what (something new in a flavored mineral water) that caused my tongue to swell and give me breathing trouble......first for me quite scary...still can not swallow without pain...normally my allergic reactions to corn would cause blood blisters in my mouth and high fever....never had this kind of reaction and I think it was to some kind of natural fruit flavoring (not eaten fruit since like march of 2017).

Anyway try a Keto/Paleo diet with no carbs for a bit, I have a theory it could be either UC like me, Candida is common for those on a higher carb/sugar gluten free diet anc causes bloating, and SIBO. If any of these the keto/Paleo diet will help resolve it.  PS if you find garlic and coconut oil causing massive bloat and gas then that is a sign of die off and it is candida or sibo.

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That sounds like a lot to contend with.  I have wondered for a while if any sugar/glucose could be a culprit too,  it’s hard trying find out exactly what is causing the problem, I’m keeping a food diary.

Did you have to have another colonoscopy to get UC diagnosed? 

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On 18/02/2018 at 11:06 PM, ravenwoodglass said:

Sorry you are suffering so much. Have you been back to see your doctor? Maybe there is something going on that isn't food related. You should at least have a panel run to make absolutely sure that gluten isn't slipping in somewhere. I hope you get some relief soon.

I regularly get blood tests from my doctor as I have more than one auto immune disease, and the recent one came back okay.  I feel like I have so many health issues, that I'm playing a juggling act with them all. :(

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On 18/02/2018 at 11:40 PM, Jmg said:

Hi :) 

Have you come across the AIP diet? 

http://www.saragottfriedmd.com/is-the-autoimmune-protocol-necessary/

I've not done it myself, I've been thinking about it since I realised my dairy issues were more serious than I'd previously realised. It does seem to have good evidence behind it although it looks difficult to do. 

Thank you, that looks very interesting.  It looks a very strict diet, and not sure how I could implement everything as my medication contains things which are on the list of "no no's".  I will definitely look into it more though! :)

 

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On 19/02/2018 at 12:00 AM, pikakegirl said:

Can realky relate. Before diagnosis i could eat almost anything. Silent Celiac. After gluten-free everything bothered my bowel. Took years to eliminate my diet down to 10 items. No multiingredient foods. After 7 years i am able to add more things. Some seem forever bad, beans of all kinds, choc,coffee,soy,etc. Found i have mthfr gene so body does not accept foilic acid foods. Checking on more. Magnesium foods go right through with cramps. Thought dairy was out but great on 0% fat greek yogurt plain. All citrus is out. Drs have no understanding. I meet others like me here and no longer feel abnormal. Hope you can start from few ok items and add on. Maybe time made me less sensitive to some. Also my stool had no bifda si orobiotics with high bifida helped me digest comfortably. Hope this share helps you find answers. Hang in there.

Wow!  It sounds like you have been through the mill too.  I was beginning to think I was alone in this, thank you for sharing.  I too, can no longer have beans, I drink decaf coffee, but I'm wondering if I'm going to have to give that one a miss too, it was bad enough giving up caffeine, but to have to give up the taste of coffee too ......  I can't tolerate soy either, nor garlic and a few other things I'm finding out, including fruit.  I hope that eventually things will settle down again like yours did.  It's an absolute minefield eat these days.  Thank you for replying. :)

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On 19/02/2018 at 1:09 AM, Ennis_TX said:

...Umm yeah I got Ulcerative Colitis a few years after celiac DIA. it flares up with bloat, gas, distention, common ones for most people are dairy, soy, gluten and in my case I get flare ups with sugars glucose, fructose, and carbs...sometimes spices. I am also allergic to corn lol. Intolerance to a whole list of things like peanuts, soy (lectin is fine everything else is vomit comet), dairy (for over 15 years now?), xantham gum in all but the tinniest amount in one supplement....if in anything else I am vomiting in a hour....recently had some odd ones crop up after some CCed and glutened twice in the past few months.....heck I just had a anaphylactic allergy to god knows what (something new in a flavored mineral water) that caused my tongue to swell and give me breathing trouble......first for me quite scary...still can not swallow without pain...normally my allergic reactions to corn would cause blood blisters in my mouth and high fever....never had this kind of reaction and I think it was to some kind of natural fruit flavoring (not eaten fruit since like march of 2017).

Anyway try a Keto/Paleo diet with no carbs for a bit, I have a theory it could be either UC like me, Candida is common for those on a higher carb/sugar gluten free diet anc causes bloating, and SIBO. If any of these the keto/Paleo diet will help resolve it.  PS if you find garlic and coconut oil causing massive bloat and gas then that is a sign of die off and it is candida or sibo.

Hi, you have a lot to contend with there.  A lot of the things you have mentioned, I too have problems with.  I think also, my problem maybe, because I have a small list of 'safe' foods, I over-use them, and am worried I am setting myself up for further intolerances in the future.  

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On 19/02/2018 at 12:19 AM, michburn said:

When my digestive system seems to go through a bad period, I start eating rice with everything. I take my time chewing it to make sure I'm helping my stomach digest, this always seems to calm things back down.  I'm wondering if the Macrobiotic diet would be good for you?  It's a tough diet in our western culture, but it might be worth it. There is a book called " Becoming Whole"  written by Meg Wolff. You will find that her struggles are with different cancers, but it's still a great educational book on diet and "becoming whole" 

Hi, Thank you for replying;  it's strange you should mention rice, I must admit I do find my stomach settles after I've eaten rice too.  I will have a look at the Macrobiotic diet, it seemed big years ago, and have forgotten all I knew about it, so will need to refresh my memory.:)

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1 hour ago, flowerqueen said:

Thank you, that looks very interesting.  It looks a very strict diet, and not sure how I could implement everything as my medication contains things which are on the list of "no no's".  I will definitely look into it more though! :)

 

Yes it's a bit intimidating to be honest, but there does appear to be very good results from it. Including people being able to reclaim foods that they were previously intolerant to after completing some time on the AIP diet.  Check out the theory behind the 30 day reset: https://chriskresser.com/5-steps-to-personalizing-your-autoimmune-paleo-protocol/ Life on AIP looks pretty challenging, but 30 days with the possibility of regaining some of the foods you've lost may be easier to take on?

 

 

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23 minutes ago, Jmg said:

Yes it's a bit intimidating to be honest, but there does appear to be very good results from it. Including people being able to reclaim foods that they were previously intolerant to after completing some time on the AIP diet.  Check out the theory behind the 30 day reset: https://chriskresser.com/5-steps-to-personalizing-your-autoimmune-paleo-protocol/ Life on AIP looks pretty challenging, but 30 days with the possibility of regaining some of the foods you've lost may be easier to take on?

 

 

Going to admit to a bit of this reasoning, I find after a glutening or a UC flare up I have to remove garlic, onions, bell peppers, and a few others from my standard paleo/keto diet plan for a few weeks, and go with steamed to mush foods. After 4-6 weeks of this going easy on my gut they are fine in moderation.

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JMG just might be on to something with the AIP diet.  Researchers at Scripps in San Diego (very reputable) just conducted a small study with IBD patients (Inflammatory Bowel Disease: Crohn’s and Ulcerative Colitis).  They had read about the AIP diet and wanted to test it.  Patients stayed on all their medications/treatments.  At the end of the study they achieved an amazing 73% remission rate.  Not a cure, but symptoms reduced and lab markers improved.  Of course more testing should be done though a longer and larger study is going to require funding (hello....Mr. Bill Gates).  This diet may help with other autoimmune disorders.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

I am considering it, but the thought of giving up coffee seems insurmountable  (I never gave it up on the Fasano gluten free when I  trialed a modified version last Fall).  

You probably know that I had a pretty bad health year in 2017.  An infected root canal (three courses of antibiotics), tooth extraction, failed bone graft (no implant....boo!), the flu, and a cold all in the course of a month or so.  On top of that a glutening.  My antibodies were off the chart.  I developed autoimmune hives (which could be a stand alone issue or related to celiac disease or Hashimoto’s).  Luckily, I responded to antihistamines which took away the itching.  The hives (all over my body) resolved in six months.  

I was so discouraged.  How could I be getting gluten exposure?  The last restaurant I ate at 1/2017) was 100% gluten free.  I am the gluten Police!  My GI wanted to do a Endoscopy, but I resisted.  Maybe I was a sensitive celiac and needed to be super strict.    I would do the Fasano diet.  It did not work.  My heartburn, indigestion, pinching stomach, were still bothering me.  Ever feel a burn drinking just water?  My endoscopy in January 2018 revealed autoimmune chronic gastritis, but healthy villi (and he went deep).  Like my Hashimoto’s, this autoimmune disorder can not be treated with diet or can it?  

Hence, the AIP diet.  My gastritis ebbs and flows, like my hives.  My GI removed a polyp, so my cancer risk has been reduced for now.  But I really need to focus on healing.  Perhaps prevent RA or Lupus which runs in my family as well.  So, still thinking.  

I hope you figure it out, but it may not be celiac disease as the root cause of your issues.  

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21 minutes ago, Ennis_TX said:

Going to admit to a bit of this reasoning, I find after a glutening or a UC flare up I have to remove garlic, onions, bell peppers, and a few others from my standard paleo/keto diet plan for a few weeks, and go with steamed to mush foods. After 4-6 weeks of this going easy on my gut they are fine in moderation.

I do this after a glutening.  While my family is eating gluten-free spaghetti and salad, I am eating stew — nice and mushy!  

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5 minutes ago, cyclinglady said:

I do this after a glutening.  While my family is eating gluten-free spaghetti and salad, I am eating stew — nice and mushy!  

LOL this is a oddy to admit, "Hot Salads" I steam green leaf, lettuce, butter leaf, Romain, etc. to a mush chop up and serve with seasonings and sometimes a nut butter or sugar free jam....tough raw veggies in salads are just brutal on my stomach. Like really a bit of jam and nut butter mixed up warmed and drizzled over wilted steamed mush veggies ....oddy but great with a bit of savory contrast like a touch of black pepper.

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On ‎2‎/‎18‎/‎2018 at 10:32 PM, flowerqueen said:

Since being diagnosed Coeliac a good few years ago now, I seem to have become to intolerant to so many things.  At first I just experienced the usual withdrawal from gluten, which took about 6 weeks.  Then came intolerance to soya (where I had really bad IBS, including really bad stomach cramps).  I had already become intolerant to dairy before being diabetic with coeliac disease. Followed by things like xanthan gum, and other additives, Quinoa and a product called Quorn, which is a meat substitute.  The latest thing to crop up seems to be fructose. I've eliminated all these things from my diet, but started with bad stomach cramps again, 10 days ago, which in the last few days has been accompanied by bad nausea and fatigue.  On Saturday I just ate gluten free bread - toasted and started to feel a lot better. I ate my dinner as usual last night, including a chocolate brownie (gluten free obviously) now wondering if I have a problem with dairy free/gluten free chocolate as well;  by bed time I was as ill as ever.  It's getting to the stage where I am scared to eat anything, as the stomach cramps get really bad after each meal.   I'm at the end of my tether and can't remember what it feels like not to feel ill with something.  I'm just reading a Low FODMAP book at the moment, but it's all getting a bit overwhelming. I've re-commenced my food diary. Any ideas please?

Could you possibly be eating too many gluten free processed foods and grains a bit too soon in your recovery process? I only mention it because you talk about soya, xantham gum, Quorn, quinoa, gluten-free bread, gluten-free brownies... I would take a long break if I was going through so much stuff. I did it too in the beginning, I pretty much just had soups, bone broth, protein, cooked veggies, nuts. No milk, no sugar, no grains: low carb. When I did have carbs, was just rice and potatoes. 

I was able to add back dairy quite early, but when I started having too many fruits and raw veggies (meaning, sugars and fermentable fiber), I started experiencing weird GI symptoms I never had before. That's when my nutritionist recommended a low FODMAP diet. She said not to stick to it too strictly, otherwise I would go mad trying to go both gluten-free and low FODMAP, but that I should use it as a guidance, to figure out my limits until I recovered completely. 

I must say she is a treasure, she is a celiac as well, and has been more helpful than the doctors. She recommended using the Monash University low FODMAP app instead of books. It isn't free but still worth it. This diet seems to be relatively recent, so the data in the app keeps being updated regularly as more foods are being tested. And if you figure out you are only sensitive to some stuff and not all FODMAPs (Oligos, Fructose, Polyols and Lactose), the app allows you to filter the allowed/forbidden foods according to your sensitivities. Also, you have all the info with you at all times, right on your phone. 

I hope it helps and that you feel better soon. 

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On 20/02/2018 at 7:40 PM, Jmg said:

Yes it's a bit intimidating to be honest, but there does appear to be very good results from it. Including people being able to reclaim foods that they were previously intolerant to after completing some time on the AIP diet.  Check out the theory behind the 30 day reset: https://chriskresser.com/5-steps-to-personalizing-your-autoimmune-paleo-protocol/ Life on AIP looks pretty challenging, but 30 days with the possibility of regaining some of the foods you've lost may be easier to take on?

 

 

I'll have a look, but it does sound intimidating, I agree, from what you've said and I'm finding the FODMAP diet challenging enough. :unsure:

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On 21/02/2018 at 4:24 PM, Juca said:

Could you possibly be eating too many gluten free processed foods and grains a bit too soon in your recovery process? I only mention it because you talk about soya, xantham gum, Quorn, quinoa, gluten-free bread, gluten-free brownies... I would take a long break if I was going through so much stuff. I did it too in the beginning, I pretty much just had soups, bone broth, protein, cooked veggies, nuts. No milk, no sugar, no grains: low carb. When I did have carbs, was just rice and potatoes. 

I was able to add back dairy quite early, but when I started having too many fruits and raw veggies (meaning, sugars and fermentable fiber), I started experiencing weird GI symptoms I never had before. That's when my nutritionist recommended a low FODMAP diet. She said not to stick to it too strictly, otherwise I would go mad trying to go both gluten-free and low FODMAP, but that I should use it as a guidance, to figure out my limits until I recovered completely. 

I must say she is a treasure, she is a celiac as well, and has been more helpful than the doctors. She recommended using the Monash University low FODMAP app instead of books. It isn't free but still worth it. This diet seems to be relatively recent, so the data in the app keeps being updated regularly as more foods are being tested. And if you figure out you are only sensitive to some stuff and not all FODMAPs (Oligos, Fructose, Polyols and Lactose), the app allows you to filter the allowed/forbidden foods according to your sensitivities. Also, you have all the info with you at all times, right on your phone. 

I hope it helps and that you feel better soon. 

I don't really eat much processed food, only gluten free bread.  Most of the meals I have are cooked from scratch at home.  I'm now on the FODMAP diet and apart from running out of ideas for meals, it's going fairly well I just hope it continues to be like that.

 

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13 hours ago, flowerqueen said:

I don't really eat much processed food, only gluten free bread.  Most of the meals I have are cooked from scratch at home.  I'm now on the FODMAP diet and apart from running out of ideas for meals, it's going fairly well I just hope it continues to be like that.

 

Meal ideas, tuna with avocado mayo, omelettes with spinach, and a touch of black pepper, Baked/grilled chicken served how ever pairs great with salads or wilted greens, Fish same baked or grilled, salmon is good but I find Swai to be REALLY easy on the stomach baked, pretty much the only meat I can eat with NO issues at all. Simple meals with as few ingredients as possible and seasoning with just cracked black pepper or a single seasoning to make the food diary easy to navigate. This will also let you get a palate idea of seasonings and lead to innovations in culinary creations later down the road.

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Hi flowerqueen

I've had a bad year with gastric symptoms which presented as gastritis. This gastritis was treated with omeprazole and zanatc for some months.  

Anyway, although my gastro was giving me regular blood tests - liver function, iron, B12, folate, full blood count, etc, he had not been testing my celiac specific readings for years. 

I was telling a stand-in doctor my symptoms after some months of gastritis - my usual gastro was on holiday -  and so the stand-in tested my TTG readings.  They were significantly elevated at 86.  I've just had an endoscopy and will be very interested in the results.

 I seem to recall (I could be wrong) that you also live in the UK?

I thought I should just mention this to you in case your consultant has been skipping this test, as mine did.  I still can't think why he wasn't testing my celiac readings but it is possible that it is because my liver function tests were very skewed at diagnosis and that was the main concern.

 

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21 hours ago, Ennis_TX said:

Meal ideas, tuna with avocado mayo, omelettes with spinach, and a touch of black pepper, Baked/grilled chicken served how ever pairs great with salads or wilted greens, Fish same baked or grilled, salmon is good but I find Swai to be REALLY easy on the stomach baked, pretty much the only meat I can eat with NO issues at all. Simple meals with as few ingredients as possible and seasoning with just cracked black pepper or a single seasoning to make the food diary easy to navigate. This will also let you get a palate idea of seasonings and lead to innovations in culinary creations later down the road.

Thank you for the suggestions. I love salmon and eat it at least once a week. I have decided to go on the low FODMAP diet, so fingers crossed .....

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16 hours ago, cristiana said:

Hi flowerqueen

I've had a bad year with gastric symptoms which presented as gastritis. This gastritis was treated with omeprazole and zanatc for some months.  

Anyway, although my gastro was giving me regular blood tests - liver function, iron, B12, folate, full blood count, etc, he had not been testing my celiac specific readings for years. 

I was telling a stand-in doctor my symptoms after some months of gastritis - my usual gastro was on holiday -  and so the stand-in tested my TTG readings.  They were significantly elevated at 86.  I've just had an endoscopy and will be very interested in the results.

 I seem to recall (I could be wrong) that you also live in the UK?

I thought I should just mention this to you in case your consultant has been skipping this test, as mine did.  I still can't think why he wasn't testing my celiac readings but it is possible that it is because my liver function tests were very skewed at diagnosis and that was the main concern.

 

Hi Christiana, you have a good memory, I do indeed live in the UK. My consultant does a full panel every time I visit, so I doubt it’s gluten.  I have started a low FODMAP diet, and am feeling quite hopeful, although the amount of other things I’m having to give up, as well as the usual gluten/dairy etc., is a bit daunting, but if it helps get me back on track, it will be worth it. 

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On 20/02/2018 at 8:24 PM, cyclinglady said:

JMG just might be on to something with the AIP diet.  Researchers at Scripps in San Diego (very reputable) just conducted a small study with IBD patients (Inflammatory Bowel Disease: Crohn’s and Ulcerative Colitis).  They had read about the AIP diet and wanted to test it.  Patients stayed on all their medications/treatments.  At the end of the study they achieved an amazing 73% remission rate.  Not a cure, but symptoms reduced and lab markers improved.  Of course more testing should be done though a longer and larger study is going to require funding (hello....Mr. Bill Gates).  This diet may help with other autoimmune disorders.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

I am considering it, but the thought of giving up coffee seems insurmountable  (I never gave it up on the Fasano gluten free when I  trialed a modified version last Fall).  

You probably know that I had a pretty bad health year in 2017.  An infected root canal (three courses of antibiotics), tooth extraction, failed bone graft (no implant....boo!), the flu, and a cold all in the course of a month or so.  On top of that a glutening.  My antibodies were off the chart.  I developed autoimmune hives (which could be a stand alone issue or related to celiac disease or Hashimoto’s).  Luckily, I responded to antihistamines which took away the itching.  The hives (all over my body) resolved in six months.  

I was so discouraged.  How could I be getting gluten exposure?  The last restaurant I ate at 1/2017) was 100% gluten free.  I am the gluten Police!  My GI wanted to do a Endoscopy, but I resisted.  Maybe I was a sensitive celiac and needed to be super strict.    I would do the Fasano diet.  It did not work.  My heartburn, indigestion, pinching stomach, were still bothering me.  Ever feel a burn drinking just water?  My endoscopy in January 2018 revealed autoimmune chronic gastritis, but healthy villi (and he went deep).  Like my Hashimoto’s, this autoimmune disorder can not be treated with diet or can it?  

Hence, the AIP diet.  My gastritis ebbs and flows, like my hives.  My GI removed a polyp, so my cancer risk has been reduced for now.  But I really need to focus on healing.  Perhaps prevent RA or Lupus which runs in my family as well.  So, still thinking.  

I hope you figure it out, but it may not be celiac disease as the root cause of your issues.  

Hi cyclinglady, yes, it does sound like a good diet, but a little strict.  I have been doing the low FODMAP for about a week now, which seems to be going okay, although last night I did have some gluten free popcorn last night, but half way through eating realised it had Demerara sugar in it which has molasses in it, so woke up with stomach ache this morning - I’m hoping this will pass.  You certainly had a bad run last year and my heart goes out to you, we have so much to contend with. I also was having problems with skin last year, really itchy skin and hives. I could barely sleep for it.  I have since changed my shower gels and it’s improved quite a bit. Oh, and yes, I have experienced burning even drinking water, in the early days, it’s not much fun is it. I’ve had a reverse osmosis water filter installed in my kitchen which filters out fluoride and chlorine etc., as I was having problems with fluoride.  (I don’t suppose fluoride does you any favours as far as osteoporosis goes either! I have the startings of this - osteopenia, which my consultant blames on the Coeliac disease). 

I think these days, modern farming etc., we are really ‘up against it’ as there’s so many pollutants and cross contamination, GM Crops etc.  It’s really hard at times, to know what to do to keep us healthy.  My husband has RA, so I know how challenging that can be, and really hope you’re successful in keeping it at bay. 

I will continue with my quest, as like you say, it may not be a gluten problem. 

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