Food tolerance issues post-diagnosis

[Jammy27]

Hi everybody,

I'm a 20 year old male, diagnosed with Celiac in February via biopsy, after suffering with progressively worsening symptoms for around a year. I had the blood test for Celiac in June 2015, which came back negative. My main issue pre-diagnosis was a feeling of uncomfortable fullness after eating small amounts which became more and more severe to the point where I was hospitalised in January with malnutrition and severe weight loss. I was placed on an NG feeding tube in hospital as I was struggling to eat at all by this point (even a bowl of cereal led to hours of discomfort - the only comparison I can use to describe the feeling was as if there was a brick sitting in my stomach after eating). An endoscopy I had whilst in hospital showed I had Celiac (flattened villi with inflammation) and follow-up gene test was positive.

After a couple of months at home on the NG tube, I found I was able to eat small amounts of food again with some symptoms but not of the severity I was experiencing previously. It seemed as if the time spent on the tube in addition to the gluten-free diet had allowed some healing to take place. I was able to eat enough to maintain my weight and came off the tube completely. My symptoms are similar now to when I came off the tube about 6 weeks ago, but I can cope with it for the moment until it heals fully. It has been a very difficult year but I'm pleased to see some progress now.

Currently, however, I am having problems tolerating food in the morning. I had been having Tesco gluten-free cornflakes with milk for breakfast and finding that OK, however I think the recipe may have been changed as the texture/taste became more coarse and I suddenly noticed the symptoms were considerably worse after eating them and upset my stomach for the rest of the day. I tried gluten-free rice krispies and milk, again without success. I am not lactose intolerant as milk and cheese don't cause problems for me and milk actually seems to settle my stomach in the morning, as when I tried toast on its own, it was much worse than milk and cereal. Has anyone had similar issues early in the day or got any tips or advice for what to eat/drink with Celiac/intestinal inflammation in the morning?

Thank you for your help. 

[squirmingitch]

Boy, you've sure had a rough time of it! My heart goes out to you! I love your positive attitude about coping until your villi heal more. THAT is your greatest ally in this journey.

Okay, now to your problems......

Your gut is still damaged. You aren't healed yet - you know that as you've stated it. It can be really wonky for the first 6 months to a year. It's like being on a roller coaster ride & you can have good days & sucko days & good weeks & weeks that are the absolute pits. My advice would be to ditch all the processed gluten free foods. You'll heal faster & have less problems eating "whole foods" --- fresh or frozen fruits & veggies, meats & dairy as long as you can tolerate it. Forget the corn flakes & rice krispies. They may be gluten free but it's still processed food & therefore full of all kinds of chemicals & preservatives & stuff you don't need. We always tell people to spend at least the 1st 6 months avoiding the processed foods. Time enough to get into those after you heal right?

How about for breakfast you have a couple eggs, either fried or pan scrambled. Some fruit -- bananas, pears, whatever floats your boat, a glass of milk, some yogurt. You may need to have well cooked foods for a while & that means mushy veggies as well as fruit. From the sound of the extent of damage you had I would say that's where you ought to be at this point. You don't want to make things any harder on your gut than necessary for the time being. You do have one great big thing in your favor & that's your age. You're young & will by all rights heal up much faster than us old geezers who weren't diagnosed until our 50's, 60's & 70's after a lifetime of damage.

Please read our Newbie 101 & follow the links contained within the threads. This will give you a ton of valuable information. Just click on it:

 

[Jmg]

I have an omelette every  morning and mix up the filling, different stir fried veggies, spinach, avocado etc.  Super nutritious and can keep me going all day if need be.  

I went awhile after gluten-free before eating cereal and now I eat it with coconut milk, Tesco's own brand is nice enough. Maybe an option if you want to experiment with avoiding dairy for awhile whilst you heal?

Best of luck!

[Jammy27]

Thanks squirmingitch, I think it's important to keep a positive attitude as much as I can during recovery and look forward to the good things to come rather than back. Support from family and friends is really helping too.

Thank you both for your advice. I'm definitely keen to keep to whole foods where possible at the moment and have tried having banana/milk over the past couple of days for breakfast which seems to be kinder on my gut, so fresh fruit seems like a good option right now.  And I hadn't considered something like an omelette so might try that out! 

[squirmingitch]

You are most welcome Jammy! Glad to hear the fruit is working out for you. BTW, you can actually freeze omelets. I do it all the time. I make more than we will eat & then freeze what's left for a quick snack or meal in future. All you do is nuke it to heat.

Also look up Frittata recipes. Make them up in muffin tins. Freeze & then nuke when you want to eat them.

[Jammy27]

Thanks for the tip! Will try that out in the next few days.

By the way, has anyone had any joy with probiotics or digestive enzymes in terms of symptom relief/speeding up the healing process? I asked my consultant about this when I saw him last week and he said that some people find them beneficial while others don't, but obviously I'm keen to try anything that may help, with uncomfortable fullness/bloating/gas still being my main issue  - is it worth giving them a go?

[squirmingitch]

In light of the studies that found some probiotics that are labeled gluten-free yet tested over 20ppm I wouldn't touch them. Now those would be the powder or pill forms. Yogurt is not affected by that. Since you don't have a problem with dairy then I would say eat some yogurt every day. I like Chobani Greek because it has more kinds of cultures. Remember now that powder or pill forms of probiotics do not come under the gluten-free labeling law. The same for OTC & prescription meds. You need to check every single one of those. There are a few online sites where you can check things like that or ask here but as far as prescription meds -- call the manufacturer EVERY TIME.

I also wanted to tell you in case you didn't already know that since celiac is genetic and can present at ANY age then all your first degree relatives need to be tested every 2 years in the absence of symptoms and immediately if symptoms present between the 2 year periods.

As far as the digestive enzymes go, I tried Digest Gold for a short time & it really didn't seem to do anything for me however I will say I had a lot of issues going on at the time so I might not know if they helped or not. I decided to quit them in order to take that out of the equation so I could try to pin down what was causing me distress. The fewer things in the mix you know. I have heard people report the same as your consultant said. Some say they helped & some say they didn't. Remember Jammy, you're just in the beginning stages. I KNOW you want to heal & heal FAST. Been there, done that! It's like this: you didn't get sick overnight & you're not going to heal overnight. Patience is the watchword here. It's hard I know! You just want to get on with your life. We can all relate. 

Again, I'm going to say to eat foods easy on your gut. WELL cooked foods. No raw carrots, coconut, nuts & stuff like that. Easier on your gut would be nut butters.... peanut butter, cashew butter, almond butter etc.... It's sort of like being a baby ---  soft, easy to digest foods. Bone broth is a great healer for you gut & extremely nutritious as well as being easy on the digestion. Here's just one recipe:

Open Original Shared Link

[Jammy27]

Ah, I didn't know that about the probiotic pills/powders, thanks for informing me. I'm having yoghurt each day at the moment which I'm hoping will be helpful.

And yes, it's really frustrating but I understand it does take time and recovery doesn't happen overnight.

I'm trying to plan some meals based around well-cooked vegetables and fresh meat/poultry at the moment, so your suggestions are much appreciated, thank you! That's one positive - you actually begin to understand the benefits of a natural, non-processed diet and why we're all encouraged so frequently to 'eat healthy'!

[squirmingitch]

You are so welcome Jammy!

It's interesting how many of us find that after eating non processed foods for a while; when we do get around to eating them we are turned off to the max.! I find even the smell of them disgusting. I liken it to cleansing the palate. Once you do, you never go back. 

You might consider subscribing to The Gluten Free Watchdog. It's a fabulous site by an extremely knowledgable nutritionist who also has celiac. She also has a site that is free. It's called Gluten Free Dietician.

[GFinDC]

Hi Jammy,

Squirmy has it right, event the smell of McDonalds foods is yucko to me.  Gas is generally caused by bacteria in the gut eating carbs and sugars that weren't digested well.  It's good idea to limit carbs and avoid sugar completely while healing.  Most carbs are converted to sugars in the body and the bacteria have a field day.  Stop feeding them sugar and carbs and the situation should improve.  Our gut bacteria can get out of whack with all the celiac damage in there.  Dairy is a problem for many people also, maybe you should stop it for a while to see what happens?  Many adults, including non-celiacs can't digest dairy.  They have lactose intolerance which is the inability to digest the sugar lactose that is in cow dairy.  So they get gassy and bloated and have symptoms.

You can also try lactaid or some other lactose digesting enzymes to see if they help.