Celiac diagnosed after 76 years

[Gillian Mary Thompsett]

I am a young 76 year old woman just diagnosed with celiac. After Tachycardia and being rushed into hospital, 3 months of thinking that acute diarrhoea was caused by heart tablets, finally  an endoscopy and biopsy taken celiac was dignosed. For four months I have been diligent in checking and eating gluten free. All my life I have eaten a healthy diet of vegetables and fruit, but since going gluten free I still have problems with acute diarrhoea. It seems now that I have problems consuming citrus fruits and vegatables, i,e raw white cabbage, raw onions etc. There also seem to be problems eating some poultry,  For example Turkey seems to be fine but chicken seems to be a no go. Am I being too ambitious thinking that diarrhoea would cease having gone gluten free.

I have lived in Brittany for 11 years and now I  am finding how difficult it is for sufferers of celiac, in France, to access gluten free products, particularly flour. 

[GFinDC]

Hi Gillian,

Welcome to the forum!

Four months is pretty early in the recovery process IMHO.  That doesn't mean you can't do better and have improved digestion though.  In celiac disease, what we eat is our medicine.  Or our poison in some cases.  So it is very important to choose foods that are good for our body and also easy to digest.  Generally, whole foods like meats, veggies, nuts, and eggs are good choices.  Having gut damage can cause our guts bacterial flora (microbiome) to get all out of whack and nasty.  That can cause lots of symptoms by itself.  Improving our gut biome requires healing first, and that means staying away from foods that cause upset.  Sugar and carbs are bad for us when healing, as they feed bad bacteria that aren't good for us.  So it's helpful to avoid sugar and carbs for a few months.  That usually means avoiding processed foods which are loaded with starches and carbs.

Dairy is often a problem at the beginning too, and some celiacs also react to oats.  So it's a good idea to avoid both of those for a few months too.

Digestive enzymes may help,

Plain, simple foods are good.

[pikakegirl]

It has been a long 10 year journey of healing for me mostly because I had little to no after care after diagnosis. First an extensive vitamin panel helped me pinpoint problems. Have tachycardia also, found I had low folic acid but took years to find a doctor who did a genetic test to know supplement was hurting me because of the MTHR genetic defect. Have intolerance to high folic acid foods. Take 3000mcgs of L Methylfolate. My neuralgia and tachycardia are much better. After 10 years gluten free I have total healing shown on pill camera images and colonoscopy. Also went chemical free in my home and additive free non processed food, no sugar. In the beginning my liver was hard, had gastritis and I had lots of allergies. Those are so much better now. still some food intolerances, mostly foods I ate with gluten. Does my gut have a memory? Stay positive it is a long journey but healing is each day.

[RMJ]

Some people with celiac have trouble with the lactose in dairy products until their intestines have healed.

[Gillian Mary Thompsett]

Thank you so much for your helpful replies. It’s so good to know there is help available on this site.

I have found avocados are a must in my diet now. I buy them by the kilo here in Bretagne from a Bio shop. They are wonderfully soothing and so good for the bowels. I’ve cut out raw cabbage and onion. I can eat green cabbage and red onions but they must be cooked.

I had an MRI scan on 9^th March this year and have an appointment with the Neurologist at the hospital on 20^th March. He thinks I may have a form of epilepsy.

The treatment we receive here in Bretagne is exemplary by Doctors, Nurses and Auxiliary staff but it is more difficult and expensive to buy the different gluten-free flours here.

Once again Merci beaucoup

Gillian Mary Thompsett

[cyclinglady]

Glad that you are improving.  It is a slow process.  A recent study confirmed (what most forum members have experienced) that it can take up to two years to completely heal from celiac disease.  Everyone has different areas of the body that have been impacted (celiac disease does not just affect the small intestine).  The learning curve for the gluten free diet is steep, but possible.  

So, be patient.  Glad that avocados are helping you.  When I get an accidental gluten exposure, I resort to well-cooked foods -- nothing raw, even fruit.  When I improve, I can add those items back into my diet.  Some members find that digestive enzymes help, but make sure they are gluten free.  

I wish you continued success!  

[GFinDC]

Hi Gillian,

I suggest you limit flours for a few months at least.  Forget about baked goods and concentrate on meats, veggies, nuts and eggs.  Around here (OHIO, USA) the only flours I use are corn meal and corn masa.  They are off the shelf and not labeled gluten-free but work fine for me.  They are not expensive either.  One in a while I make corn muffins with them.  Other than that I do eat Mission brand corn tortillas which are gluten-free.  Once in a while I'll get some Udis' gluten-free millet-chia bread.  But I try not to eat flours/baked goods every week.  And I don't!   I do eat Frito's corn chips though, mostly as soup crackers.

It is better not to eat a lot of baked goods IMHO.  They are full of carbs and also can be risky for cross contamination.

[gunsandroses]

Eureka! You are confirming what I have been thinking and going through. I am 77 female referred to a gastro by his wife my ob gyn, went once, he gave me a sheet that said eat no grain no dairy come back for a colonostomy   and come back in 30 days. On the 21st day in my husband died and I had other things  needeing for attention so I did have the colon pic passed that but never went back. I stayed on no grain no dairy for a year ( after three weeks I knew by the way I felt that this was the 'way' for me. After a year I went back 65 pounds lighter, off all other meds, felt like a fog had been lifted from my brain and he said you have Celiac you're doing everything just perfectly ( I walk three miles every day and was enjoying a whole new wonderful life like I hadn't in years. I lost my health insurance when my husband died so I don't go day tripping to drs any more and the gastro said just how much $ do you have to spend to be tested?  Like none. The change in my digestive system is a miracle. I got my 30 year old innerds back! I said none and haven't been back since.

Now I read your site and realize how lucky I was as I don't suffer a bit. I eat no grain and no dairy which I guess makes me gluten free. I eat no potatoes, rice,  No processed food, all organic, no chemicals flavorings, no alcohol, no added sugar, I am too busy living my life as the matriarch of a wonderful family. Everything I did in the last two years I did with what I read on the interent.

My question to you today,  when I read about people who have experienced a 'cure' and are adding back foods is this. I am happy with what I'm doing but although  I live alone and can eat my weird food plan forever there is pressure on me to try the new and wonderful gluten free flours and recipes. This is processed by my definition,  and contain potatoe and rice flours I don't eat potatoes except sweet and that is seldom because of the sugars. Now I am baffled. Yes I am Celiac, yes my gastro said I'm doing everything right. Why  I should I  add glueten free foods to my diet?   Once in a blue moon I make almond flour bread but it is expensive and alhough nice to spread my only bit of dairy on not worth the trouble. I used to make cheese so I take non fat plain yogurt filter it through coffee filters in the refrig, til it's the consistancy of cream cheese and use that maybe two ounces  a day mixed in with my  food to give it some 'depth'? I don't tknow, I just like it and its' kind 0f paleo no? So my question is this I never want to go back to pre Celiac, if you were me would you start down this slippery road to processed foods?

[Jmg]

Hello and welcome G&R 

1 hour ago, gunsandroses said:

So my question is this I never want to go back to pre Celiac, if you were me would you start down this slippery road to processed foods?

No if you're happy as you are I wouldn't purposely add those foods. They're not 'good' for you, but for some of us they're either convenient (the humble sandwich is a great way of taking food in on the go) or they're a reminder of our past diet.

As I cut out so many of the foods I used to enjoy I find I value the occasional slice of gluten-free chocolate cake or a pseudough slice of toast  But it's still carb heavy and not even fortfied like the gluten stuff is, if I eat too much of it I don't feel great so if you can live without it do so!

[cyclinglady]

@gunsandroses Maybe your doctor was smart in advising you to remove both gluten and dairy as he knew that intestinal damage from celiac disease usually causes lactose intolerance.  For many it is just temporary as the intestines heal.  For others, lactose intolerance is just simply genetic (a huge chunk of the world's population is lactose intolerant) or occurs with naturally with aging.  If this is the case, healing from celiac disease will not help with lactose intolerance.  

 I think it takes a lot to change a diet when everyone else has been consuming the Standard American Diet (or whatever you want to call it) for the past 60 years or so.  Kudos for you for being able to do it!  

Eat how you like.  I am glad you are doing well!  

[squirmingitch]

gunsandroses, Eat what you like. If you're happy with the foods you're eating then by all means, go forth with that. No need to change unless you desire it. A big clapping of hands to you for doing well! 

[gunsandroses]

Thank you both. I feel that what has worked for two years makes me feel so good that I am just reacting to all the ads I see for gluten free products . It's so complicated. I added no processed foods all on my own as several doctors have advised not eating processed foods. therefore flour made gluten free commerecially is a processed  food, right? In other words a carrot is a carrot but canned with salt or  even citrus acid anything extra makes it processed in my book.  Thank you for reinforcing the old if it's not broke don't fix it rule I live by.

[squirmingitch]

Good analogy. If it ain't broke, don't fix it.