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Gemma H

Gluten Intolerance - Coping

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Hi All, 

Recently (Nov 2017) I was diagnosed with NCGI by my consultant at hospital, this diagnosis has been after years of testing, colonoscopies, endoscopies and a 2 stone weight loss - it took the weight loss for me to finally be taken seriously by dr's. (I was tested for celiac around a year ago, all clear).

I'm looking for advice to help me cope with this diagnosis, albeit I am thrilled that I potentially do not have anything life threatening (still undergoing tests, hosp visits etc.) but on the whole, I'm feeling hopeful that gluten may be the root cause to all my ailments and symptoms. 

From diagnosis, I have cut out gluten completely, and apart from the odd slip up or cross contamination incident I have noticed a drastic improvement in my life quality and my time spent inside my bathroom walls has dramatically reduced. (TMI?) 

The problem I am currently having is that I feel completely isolated from everyone in my life, I feel that me having to follow this strict diet is putting a burden on loved ones, especially when it comes to travel & eating out. (Was over in Berlin over the weekend, spent a good 5 hours over the weekend crying at being a burden to my BF restricting where we can eat, and also the fact that the majority of places we tried to dine, bar one or two, did not cater to the diet). 

I thought I was coping with the diagnosis well, however the crying spell and fed up feeling with it proved I'm not. Does anyone have any good tips they followed and can recommend when they were newly diagnosed? 

 

Xxx

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Hi Gemma,

Welcome to the very select, exclusive, super secret club of NCGS (or I if you like), where you get all the fun of living the gluten free diet with the added scepticism of half the medical establishment and most of the general public

 :P

If you're interested in learning more, there's some good resources collected here: 

Feel free to add or just post there if you like. 

47 minutes ago, Gemma H said:

From diagnosis, I have cut out gluten completely, and apart from the odd slip up or cross contamination incident I have noticed a drastic improvement in my life quality and my time spent inside my bathroom walls has dramatically reduced. (TMI?) 

The problem I am currently having is that I feel completely isolated from everyone in my life, I feel that me having to follow this strict diet is putting a burden on loved ones, especially when it comes to travel & eating out. (Was over in Berlin over the weekend, spent a good 5 hours over the weekend crying at being a burden to my BF restricting where we can eat, and also the fact that the majority of places we tried to dine, bar one or two, did not cater to the diet). 

It's great that the diet is working for you.

The emotional side is difficult no doubt. It does get easier, trust me, for you and those around you also. You get better at planning, at coping, at working around it etc. The availability of safe foods and wider knowledge continues to improve year on year.  I've barely been back to Germany, one of my favourite countries, since going gluten-free but take some comfort in the fact that its always harder in a different country with a language barrier as well, but even so there's hope:

https://foursquare.com/top-places/berlin/best-places-glutenfree-food

https://www.tripadvisor.co.uk/Restaurants-g187323-zfz10992-Berlin.html

You maybe need to accept there's a level of preplanning needed now that wasn't there before and if you do that you can still be spontaneous in other ways?

54 minutes ago, Gemma H said:

I thought I was coping with the diagnosis well, however the crying spell and fed up feeling with it proved I'm not. Does anyone have any good tips they followed and can recommend when they were newly diagnosed

Expect some setbacks, at times its ok to cry. Or, er happen to get something in your eye if you're a strapping bloke who should know better :)

Keep a good supply of nice safe snacks and treats at close hand. In your car/bag/pocket. Eat well before you go out. Have your freezer well stocked with nice safe food and your fridge too. Get to know what easy safe options are available, Are you in the UK? Join Coeliac.org and they'll send you the brilliant guide which will unlock so many safe, cheap foods, also available as an app.

And post here, lots of good people with advice and support.

Best of luck,

Matt

 

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Hey! 

I also recently started a gluten free diet because of non Celiac's gluten sensitivity, and as a college student who can't really eat in the dining hall or participate in late night pizza runs, I totally understand where you're coming from. First things first: you probably aren't as much of a burden on people as you think you are. They most likely understand that this is a big transition period for you and will take time. If you are really worried about it,  just talk to them, explain your concern and try to come up with a plan. I have found that if I don't make a big deal about being gluten free, neither will anyone else. The first time or two matter of factly explain that you cannot eat gluten for medical reasons, after that, if someone offers you something you can't eat, I have found it to be best to just respond with a simple "no thanks!" As far as making sure you don't starve, nut based granola bars (such as kind bars) are your best friend. I always try to have one or two handy, especially on trips! ( I like to have savory ones, like Thai chili flavored, that way it feel more like eating real food than sweet flavored ones!) That way, if there is really nothing you can eat, you always have something. I also scoured celiac and gluten free blogs my first few weeks and figured out what fast food places have Celiac's and NCGS friendly options (Chick-fil-A is a good one, I usually get their fries and request that they fry them in their designated gluten free frier, and a side salad, Wendy's is also good, you can get any of their baked potatoes, chili, or side salad with no croutons, there are a lot of other places too, but there are my favorites) I have found that a lot of times there are things that we can eat places, but because Celiac's and especially NCGS is something that has just started to get more attention, most people, even those working at restaurants just aren't familiar with it, and most restaurants do not have a designated gluten free menu. Your smart phone and Google are also great, I am all the time in a  restaurant googling "does (restaurant's dish) have  gluten?" Usually we can eat salads, and burgers and such without buns, but it is always a good idea to just tell your waiter or the person taking your order something to the effect of " hey! I am unable to eat gluten for medical reasons, which means I can't have things made with wheat, rye , or barley, or anything that touches things made with it, I was hoping to have (dish), Which isn't made with any of these things, but was wondering if you could use clean utensils and preparing area, that way I don't get sick! Thank you!" Usually people are more than happy to help, they just don't understand your situation. As far as you feeling like less of an outcast, this transition period has been a great time for me to realize the importance of hanging out with people and enjoying their company, even if you can't fully participate. No one really cares if they are all eating pizza and you are eating a sandwich you brought on gluten free bread. People are going to express concern because they care about you and don't want you to be hungry or feel left out. Whenever someone says something like " oh will you be able to eat anything here?" Or "oh I'm sorry I'm eating (delicious gluten thing)" just not making a big deal out of it and saying something like "oh I'm good anywhere!" (Because you are with your granola bar! Also you can almost always eat salad) Or "no, you enjoy what you like!" Will make you and them feel better. For a while you will feel a little left out, and that is okay, but I have found that I am so much happier when I go on that pizza run with my friends and a granola bar, even if at first you have to fake it till you make it! Good luck! I know it isn't easy, but it does get better!💙💙

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18 hours ago, Jmg said:

Hi Gemma,

Welcome to the very select, exclusive, super secret club of NCGS (or I if you like), where you get all the fun of living the gluten free diet with the added scepticism of half the medical establishment and most of the general public

 :P

If you're interested in learning more, there's some good resources collected here: 

Feel free to add or just post there if you like. 

It's great that the diet is working for you.

The emotional side is difficult no doubt. It does get easier, trust me, for you and those around you also. You get better at planning, at coping, at working around it etc. The availability of safe foods and wider knowledge continues to improve year on year.  I've barely been back to Germany, one of my favourite countries, since going gluten-free but take some comfort in the fact that its always harder in a different country with a language barrier as well, but even so there's hope:

https://foursquare.com/top-places/berlin/best-places-glutenfree-food

https://www.tripadvisor.co.uk/Restaurants-g187323-zfz10992-Berlin.html

You maybe need to accept there's a level of preplanning needed now that wasn't there before and if you do that you can still be spontaneous in other ways?

Expect some setbacks, at times its ok to cry. Or, er happen to get something in your eye if you're a strapping bloke who should know better :)

Keep a good supply of nice safe snacks and treats at close hand. In your car/bag/pocket. Eat well before you go out. Have your freezer well stocked with nice safe food and your fridge too. Get to know what easy safe options are available, Are you in the UK? Join Coeliac.org and they'll send you the brilliant guide which will unlock so many safe, cheap foods, also available as an app.

And post here, lots of good people with advice and support.

Best of luck,

Matt

 

Hi Matt, 

Thanks for taking the time to reply! :) I completely agree haha. 

Thanks for the links - I'll give them a read over! 

I think it was a mixture of the first time travelling with being gluten-free and the added bonus of the language barrier, it made me dread meal times when usually food is the first thing I think about when travelling to new places!

Again, I think the planning element was also a factor, not being able to walk past a nice bakery without walking in - why do most Berlin train stations have bakeries in everyone?!?! THE SMELL!!! 

Haha, good excuse! Could have used that in the hotel restaurant (arrived late the first night) and the only avail dish was a dry chicken Caesar salad (literally 3 thin slices of chicken, 5 cherry tomatoes and a plate of lettuce). 

I am I'll give the website a look over too - thank you! My app's with my consultant are every 6 months, basically was just sent away with no info/advice given and feeling the struggle now that reality has set in that this is for good! 

Hope you are well! 

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Gemma......if you are ever in London, please check out this place.  It is a 100% gluten free bakery and the food is out of this world!  I can't get bread like this in the States and it certainly is worth a road trip for anyone living in the Uk, within reasonable distance from London.  It will easily satisfy all of your bakery cravings and I bet the bread freezes well.

http://www.beyondbread.co.uk/

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On ‎23‎/‎01‎/‎2018 at 8:56 PM, Gemini said:

Gemma......if you are ever in London, please check out this place.  It is a 100% gluten free bakery and the food is out of this world!  I can't get bread like this in the States and it certainly is worth a road trip for anyone living in the Uk, within reasonable distance from London.  It will easily satisfy all of your bakery cravings and I bet the bread freezes well.

http://www.beyondbread.co.uk/

Hi, 

Thank you for replying, 

Unfortunetly I live in Glasgow in Scotland, would be a 14hr return trip! If I'm ever in London I'll be sure to check them out ! 

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On 1/25/2018 at 9:28 AM, Gemma H said:

Hi, 

Thank you for replying, 

Unfortunetly I live in Glasgow in Scotland, would be a 14hr return trip! If I'm ever in London I'll be sure to check them out ! 

Oh...there's nothing unfortunate about living in Scotland!  I have been there and it's a lovely country.  ;)

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    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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      Taking BCAAs or bit of protein powder/protein bars between meals can help with preventing weight loss, I just Julian bakery bars, or protein powders like Jarrow Pumpkin, and my own blends....you can probably get by with blends like I used to from Nutra-key V-pro and MRM Veggie Elite.
    • Hi Bree, You need to avoid wheat, rye, and barley, including malt.  It is best to avoid oats and dairy for a few months at the start of the gluten-free diet.  Personally I would avoid soy also. The best thing though is to just stop eating processed foods for a few months at least.  And don't eat in restaurants and also cook your own meals.  A simpler diet is best for healing.  Plus if you are getting sick from a food ingredient it is simple to figure out.  Eating processed foods (like gluten-free pizza) etc you could take in 100 more ingredients in a day.  That means you have to figure out which of those 100 ingredients is making you sick.  Not an easy task.  So I suggest you simplify your diet and learn the easy/fast  way.  Eating out at restaurants will slow your healing/learning down. It is better to take some food with you if you are going out.  Nuts, fruit, hard boiled eggs are easy to carry around.
    • Please don't waste your money on Enterolab.  They have never submitted any proof for peer review verification.  They are glad to take your cash though. I am not familiar with the MC diet.  But many celiacs avoid additional foods beyond just gluten.  I don't eat dairy, soy, nightshades, carrots, celery, oats.  Probably a few I am forgetting.  Many others here avoid other foods too.  There is still plenty to eat though.  Meats and veggies, nuts, eggs etc.  There is almond milk and coconut milk in the stores.  What is helpful on starting the gluten-free diet is to avoid all processed foods and stick with whole foods.  Do all your own cooking and don't eat at restaurants for 6 months.  In celiac, even a small crumb can kick off the immune system reaction.  So we have to avoid cross-contamination of foods.  So no shared condiments jars like mayo, peanut butter, etc.  There is a very short list of ingredients on whole foods. Simplifying your diet is a good thing.  The fewer foods you eat the easier it is to identify a problem food.  Sometimes an elimination diet is helpful to find problem foods. We have a member ennis-tx who has ulcerative colitis.  Ennis eats a keto/paleo/gluten-free/df diet.  Maybe his experience would be helpful to you.  He also has lots of recipes because he is a chef. I'll try and point him to this thread.
    • Those food sensitivity tests on Enterolab are not accepted by actual Celiac doctors.  This sites probably gets a percentage of everyone they send to get the bogus tests.     And I am going to guess that 11 days will not be enough to heal the colitis.  Why not try a restrictive diet for a month or two and see if it helps?  I am surprised that your doctor knew enough to biopsy you for microscopic colitis but didn't advise any diet changes.  Did he say how bad or wide spread it was? 
    • There you go.  The gluten-free diet has helped you.  You might not need,that official diagnosis.   After all, the bottom line is achieving good health.   P.S.  Those Romans went everywhere!  I think now, northern  India (where they grown wheat and not rice) has an even higher rate of celiac disease than Europe.  
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