Symptoms Returning : Diet Failure Or Normal?

[Japonpoko]

Hi everyone !

 

I've actually already been writing about my case last year around October. I discovered I was intolerant to gluten in July, started a light diet (stopped eating obviously glutened stuff, but I wasn't that strict), and immediately felt better... Until October. Then, my symptoms came back. I thought it was because of my diet, so I stopped everything, and I am today extremely strict. I stopped dairy just to be sure (and I'm thinking about taking some soon to be sure it is not pointless), and everything which could have gluten inside. I'm living in Japan, so I'm also almost never eating outside, except sushi (with salt only).

 

Now, we're in July, it's been a year, and I still feel pretty bad. Some of the symptoms did disappear, but the extreme fatigue is still there, and I've got plenty of new ones (especially digestive problems, retinal migraine...).

 

Fact is, Japanese do not really care about gluten, and I am afraid some things I eat actually have gluten inside. However, I've really been cutting a lot of things, and right now, I'm only eating rice, chicken or pork (very few) meat, soy sauce (wheat free), mushroom, eggs and honey. Also some fruits (banana, lemon...).

I really don't see how I could be more strict.

 

So, here is my question : Am I missing something important? Am I intolerant to something else? If yes, what should I do?

Or is it normal to have so many symptoms even after almost a year of strict diet?

 

I am a ultra positive person so even though my condition is terrible, I still manage to stay strong, go to work and meet a lot of people (while canceling half of my plans because of "sudden" cold). But I must say that I'd like to have a normal life.

 

 

On a side note :

I've found a company selling wheat free ham. I asked them if it was gluten free, but they kind of kicked the ball in touch (I think they have no idea and just don't want to take any risk).

Is a wheat free ham also gluten free? Or is there still some risk?

I really need to eat some !

[peter99ff]

Best guess is cross contamination. While on a diet you'll become far more sensitive and susceptible, possibly to another proteins as well like dairy maybe. We're dealing with an auto immune syndrome where your body is going to fight itself. 

 

I stick to Boar's Head ham 

 

Read this article Open Original Shared Link

[peter99ff]

Watch the salt also. You may be reacting to the iodine which causes "DH". 

 

Also coffee, stay away. I'm still on it but it is likely a cross contaminator.

Migraines and neurological symptoms are the indicators responding to gluten more over the digestive, from what I've researched.

 

I'm reactive lower then the test limits of 6ppm so I understand what you're saying. Its difficult so I've been going more into cross contamination and possibly similar gluten proteins that your body may react to in a defensive way. 

[kareng]

There is no real scientific evidence for this "cross reactive" stuff.  

Open Original Shared Link

 

Back to the OP - It is hard to know what is going on with you.  You don't know if you actually have Celiac or not. Maybe you should see a doctor? There are lots of other things that could be causing fatigue, like thyroid issues.  Also, the limited diet may be lacking nutrients and making things worse.

[peter99ff]

A blood panel would give you an idea of most of your levels to lead you in a direction of lacking specific vitamins minerals etc, or if you're say high in iron which could be related to energy problems. Most people go through these symptoms related to this.

 

Also keep in mind it may take 6-8 months to detox your body of any number of things. It may be a good practice to also to keep a diary of what and where you eat. After being on this diet for about 14 years it does help to reference food and health remarks. Also to reference with your doctor what symptoms: digestive, neurological etc. It would be a good practice

 

I don't know what the standard practices and procedures are of food production are there, but if your change in eating habits has worked I'd keep track of, again, what foods you eat and where, especially say restaurants and products. If cross contamination wasn't a concern there would be no standard and practice in the industry.

 

It would be a good idea to consult a doctor and do tests especially if you had digestive issues, not only to see if you have other related diseases but to see how well your digestive track healed, which karen pointed out you could be deficient in areas because your body wasn't absorbing the food you were eating. Its like a double edge sword, if you have coeliac and are affected then not only is your body fighting itself, it is also not absorbing the food you eat

[bartfull]

The first thing I would look at (should you decide to stay gluten-free and not get tested) would be contamination in the home. Please read the Newbie 101 thread in the coping section to learn more.

[jddh]

It's also possible that prior "active" celiac disease can trigger other functional digestive disorders, even after transitioning to a strict gluten-free diet. I'm also in the camp of persistent symptoms despite a strict diet, and a top celiac doctor at the Mayo assured me of this.

 

That said, as others have said above, serology testing can give you vital clues as to what's going on. Functional disorders tend to be the likely diagnosis only after diet contamination and other disorders have been ruled out.

 

Are you able to decipher Japanese ingredient labels? That's essential to making sure your kitchen inventory is safe.

[Japonpoko]

First, thank you all for your answers.

 

I would love to do more testing (even though I am not sure of which ones I should do), but Japanese doctors don't know anything about this, and I have yet to find any good one where I am living.

I tried to go to a famous hospital in my city, and I was sent to the only "international" doctor of the place speaking English... Even though I am fluent in Japanese and was asking to see someone not speaking English (because that guy was obviously hired for his English skills, and not for his medecine ones. Japan works this way). This can give you an idea about how difficult it is to receive appropriate treatment in Japan. Everytime I ask a doctor about these symptoms, they just take one of them and see how they can make it stop, without trying to see it as a whole... When they're not just saying it's a cold (woot).

 

Regarding cross-contamination : I am living alone, making my own food for both lunch and dinner, and never eating outside more than once a month, which is always to eat sushi, without wasabi and sauce. I only buy raw meat and completely safe food (no dairy). It is obviously not well balanced, so eating few vegetables and almost the same thing might be a problem in itself, but I am at a level where cross-contamination cannot be tracked anymore. As said before, I am fluent in Japanese, so I have no problem reading ingredients information. Well, fact is, I am pretty sure Japanese are not writing everything anyway.

Could honey possibly be the cause of my symptoms? It's one of the only thing I eat everyday since then and that I have never stopped (only way I found to make rice taste good).

Or it could be the wheat free soy sauce. But I don't see how I could eat in Japan without this.

Would it be a good idea to stop one of  the above for 2 weeks? Enough to notice a change?

 

How can I eat without salt though? Meat without salt? Well, I can do that, but I'd have to use even more honey than I am now.

I want to try eating some gluten once in order to be sure this is actually the problem, but I remember getting pretty sick twice last year after eating something probably glutened, so this might not be worth it.

Anyway, I'll try to stop eating salt, honey and soy sauce (not at the same time though), and  when I go back to France this winter, I'll do as many tests as I can.

 

Glad to know it can take time to detox your body, might be just a matter of time.

 

EDIT : By the way, I am not drinking tea nor coffee, but I'm taking (hot) water from a machine from which you can also take tea and coffee (no wheat tea though). 

[bartfull]

Are you using cast iron pans, cutting boards, wooden spoons, scratched plastics, or a toaster that ever contained gluten? Those things will CC you.

[manasota]

How much honey are you consuming?  It is very high in fructose and can cause lots of people problems.  You'd be amazed how "sweet" plain food can taste when you consume no sweeteners whatsoever!