Deterioration after one year - confused and worried

[Jammy27]

Hi everyone,

I've posted a couple of threads over the past few months but could really use some advice. I was hospitalised last January and placed on a nasogastric tube for feeding as I could no longer eat orally due to severe abdominal discomfort. I was diagnosed with Coeliac two weeks later. I came off the tube in April after finding that my symptoms had improved and I could tolerate normal food again. Over the summer I found certain foods I couldn't tolerate and did feel bloated etc. at times but overall I felt I was stable/improving.

Around September, I started to feel ill again, although the symptoms are not so much 'fullness' like they were from the gluten pre-diagnosis, more the kind of feeling you get if you've eaten something 'off'/have food poisoning, as well as nausea, heartburn and major fatigue after eating. These sensations continued to get worse until I eliminated dairy as suggested by my doctor (I cut out soy too). This helped a little with some of the worst symptoms but now I find they're getting more severe again, and I feel like I'm going round and round in circles trying to get to the bottom of what could be causing this but with no success. Could eggs be an issue potentially? It just feels like I'm stabbing around in the dark. I'm very careful with the gluten-free diet - I check all products meticulously, prepare all meals myself and watch out for cross contamination.

Obviously I'm scared because of how serious things got last year and don't want to go back into hospital/on the tube again. I've had a gastric emptying scan and that was normal. Does anyone have any ideas?  Has anyone improved on the gluten-free diet then felt worse again and if so, what helped you to feel better?

[fergusminto]

Read up about Zonulin - it might answer a few questions and reduce your stress levels. You are not the only Coeliac with these problem believe me! celiac disease can bring intolerances with it. T

[GFinDC]

Hi Jammy,

I am sorry to hear you are having problems on the gluten-free diet.  Healing our guts is not always fast, as the immune response is not always shut down very quickly.  Also, even a tiny amount of gluten can keep the immune response going, or kick it off in high gear again.

Another problem is our gut bacterial flora can be out of whack due to the long term celiac disease damage.  We can't always digest carbs and sugars correctly and the undigested carbs provide a massive food source for nasty bacteria.  That's why it is helpful to limit carbs and sugar and dairy for that matter.

Assuming your issues are related to celiac disease, there are some steps you can take.  One, make sure you are 100% gluten-free.  No cross contamination or risky foods like processed foods.

Try an elimination diet.  An elimination diet can help us determine if we are reacting to one or more foods.  It is possible to have more than one food intolerance crop up.  A person can develop an intolerance to any food.  The most common food allergens (the top 8) in the US are

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Open Original Shared Link

Major Food Allergens

While more than 160 foods can cause allergic reactions in people with food allergies, the law identifies the eight most common allergenic foods. These foods account for 90 percent of food allergic reactions, and are the food sources from which many other ingredients are derived.

The eight foods identified by the law are:

1. Milk
2. Eggs
3. Fish (e.g., bass, flounder, cod)
4. Crustacean shellfish (e.g. crab, lobster, shrimp)
5. Tree nuts (e.g., almonds, walnuts, pecans)
6. Peanuts
7. Wheat
8. Soybeans

These eight foods, and any ingredient that contains protein derived from one or more of them, are designated as “major food allergens” by FALCPA. 

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Note these are food allergens, while what celiacs develop are mostly food intolerances.  It is possible we may be more likely to develop food intolerances of foods we eat a lot of regularly.  That is why some people do a rotation diet, to avoid that possibility.  Unfortunately, there are very few tests for food intolerances.  So we need to test ourselves with an elimination diet.

Before doing that though, make a good trial diet of only whole foods for a month or 2.  Any processed food is more likely to cause digestive problems than a whole food is IMHO.

You might also find Betaine HCL capsules helpful before or after eating.  They generate some hydrochloric acid in the stomach which can aid digestion.

[Ennis-TX]

I suggest a food elimination diet, removing all processed food period. Then try eating certain raw whole foods and on a process of elimination. This way you can figure out what food is causing your issues. I found keeping a base diet of salad no seasoning, or dressing, with a plain protein and then ever few days trying a different "Side Food" then recording how I felt. It was bland in a pain in the ass but found my food issues over a few months. Note you have to remove foods for a full week then try it consistently 1-2 days then remove it again for a good idea. Simple, annoying, but very efficient method for finding your intolerance.

[Awol cast iron stomach]

As others said above all the above are factors.

After 31/2 years gluten free I underwent a gluten challenge.

Once gluten destroys me I am more susceptible to other havoc wreking. As they stated above no processed stuff including gluten-free items now as Ennis said. I removed many of the top 8 allergens and added in slowly one at a time to test. 

Besides gluten, corn, and cow dairy are problems for me. Corn is almost as many multi symptoms for me as gluten. Cow dairy gives me muscle pain and joint inflammation. 

Gluten and corn are zonulin issues for me big time!

All the posters gave great advice.

Good luck 

[Jmg]

Jammy everyone above has nailed it so just wanted to post some mutual support! 

One suggestion. When making any changes to diet Be sure to keep a food journal, jnote everything your consume, the time and how you feel. It may be a pain but it's a really powerful tool in helping to track down things which are a problem. It helped me identify gluten in the first instance and it helped me track down some rogue gluten that got into my diet later. 

Either a small notepad would do the trick or maybe use your smartphone if y have one and then you can keep the copy on the cloud for easy reference later. 

Best of luck!

[Ennis-TX]

10 hours ago, Awol cast iron stomach said:

As others said above all the above are factors.

After 31/2 years gluten free I underwent a gluten challenge.

Once gluten destroys me I am more susceptible to other havoc wreking. As they stated above no processed stuff including gluten-free items now as Ennis said. I removed many of the top 8 allergens and added in slowly one at a time to test. 

Besides gluten, corn, and cow dairy are problems for me. Corn is almost as many multi symptoms for me as gluten. Cow dairy gives me muscle pain and joint inflammation. 

Gluten and corn are zonulin issues for me big time!

All the posters gave great advice.

Good luck 

Welcome Comrade, to the Gluten, Corn, and Dairy free life. If you need help tell me, I am highly allergic to corn so I know with a gluten-free and corn there are major restrictions. Like in baking powder the only safe one is Heinz as it does not use corn starch, most processed foods even the gluten-free ones use plain which has corn starch. Enjoy Life is you friend there free of corn. I can help you out with other products like chips, get Beanitos, taste like corn chips but corn free. I have learned much over the years and sometimes it still sneaks up on you. Like I just had a major reaction to a jam that seems to have corn in one of the processed ingredients. I have had to make many things from scratch to substitute in addition. Glad you tracked it down, and once you get a hang of the diet it is quite easy.

[Jammy27]

Thanks everyone for your advice, it's much appreciated.

I have been eating some processed foods like gluten-free biscuits since my diagnosis which I'm now cutting out, so hopefully that helps. I've been keeping a food diary, so will definitely keep that up. It seems as if, after diagnosis and coming off the tube, my digestive system cannot tolerate 'crunchy' or stodgy foods very well.  I seem to tolerate soft foods though, so am going to try sticking to those from now on. Has anyone else experienced anything similar or have any ideas why this might be the case? 

[tessa25]

I only get better on a bland liquid diet. It's easy on my damaged intestines. As long as my blood test numbers keep going down I don't question it.