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Getting Confused/scared About Future


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#1 bennl1

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Posted 11 May 2012 - 01:04 AM

I'm getting confused, even scared when reading the posts in this forum. So many people seem to get all sorts of symptoms after going gluten free. Is that to be my future too? I'm feeling great now, how long will that last?

As my experience and approach are very different to that of most, I'm sharing it here in a rather long story, with the big questions at the end.

If I understand celiac correctly, it destroys the villi in the small intestine, making it not functioning anymore. So the food will go undigested into the colon for the bacteria and parasites to feast on. I assume that it is their overgrowth causing the bloating, flatulence and foul smelling mushy stools.

I lived in Thailand for 4 years, were I only had very mild occasional symptoms. My diet was mainly standard Thai food with maybe one loaf of bread per month and a very rare visit to a junk food establishment. Within 3 months after returning, all hell broke loose. Went to the doctor. The blood and stool analysis showed nothing specific, so I was left un-medicated and referred to a specialist at an Academic Hospital. Insane, a waiting time of 4 months!

Now it made sense to me that the non-Thai food was causing my problems, so the first thing I did was to go on a strict Thai diet. My symptoms decreased by about 80%. Yet the remaining 20% were still a lot of discomfort.

The way it felt to me was that fermentation processes were going on inside my belly. Googling came up with the controversial Candida overgrowth and the SCDiet. I started on that, however, being dairy intolerant, got rather tired of the continuous promotion of cheese, yoghurt and pro-biotics. In my opinion people in Asia don't use dairy and seem to be OK on that, so a healthy life without dairy should be possible too. Anyway, SCDiet without dairy led me to the Paleo diet and I ended up on that.

By the time I finally got to see the specialist, after 4 months of non-starch, non—sugar, non-alcohol dieting, all my symptoms had disappeared. It was then that I learned that my previous stool analysis was wrongly interpreted. It was clear that I was infested with the parasite Blastocystis Hominis. As the symptoms were gone by then, it seemed that the diet had worked. A new analysis was ordered to check that and indeed, the parasite was gone.

Now for the specialist, my dairy intolerance, previous diagnosed vile acid diarrhea (1980's) and B12 mal-absorption were indications to suspect celiac. Or it was that I clearly indicated that I suspected my small intestine not to function properly and asked him to find the cause. Anyway, a biopsy was scheduled.

As I was already 4 months on Paleo, I was also 4 months gluten free. So, before having the scope, I had to go on a gluten challenge: 2 months of 30g gluten/day. Terrified of having the parasites resurrect again, I opted for gluten‑powder, a way to gluten myself without a lot of parasites feeding starch (only 10g/day). Absolutely disgusting stuff, no matter what I mixed it with, the terrible smell of it made me nauseous. After one month I had to reduce the amount, as I was not able to keep it inside anymore.

The scope was done and the biopsies taken. Without awaiting the results, I went on gluten free the next day. Two weeks later, when I was on a one month holiday in Thailand to recover from my ordeals, I got the result by phone and it was positive for celiac. Maybe it sounds strange, but to me it was really good news. After a lifetime of discomfort and misdiagnoses, I finally knew the cause and the cure! Unfortunately nobody I know shared my joy.

Contrary to most people, I'm not replacing products in the standard Western diet by the special gluten free variations, I just got fully rid of the Westernized eating habits. I stick to Thai food only, which by origin is gluten and dairy free. Only eliminated the bami noodles, spring rolls and check the origin of broths. That's it. Those products are not originally Thai anyway.

Now, I doubt that I have not been glutened during the month holiday in Thailand. I did not cook at all, all food was from food vendors or restaurants. I did not care about the soy sauce either (seems to be a controversial product anyway). For what it is worth, I did not have any negative reaction at all. Within 2 weeks my stool became textbook like and my skin (diagnosed as Seborrheic eczema, but guess it's DH) became smooth.

Here are the big questions:
1) If gluten only damages the villi, how can occasionally being glutened cause so much discomfort?
2) Why did I not have any severe reactions so far, have I really not been glutened?
3) Are reactions not showing because I got rid of my bacterial and parasite overgrowth first?
4) Does my refusal to use any form of dairy have any influence?
5) Or have I just been lucky so far and serious problems are yet to appear?
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Ben (58)

Diagnosed Celiac 12-Apr-2012
Dairy intolerant, B12 malabsorption, Bile acid malabsorption.
Osteopania
Lifetime of misdiagnoses.

2008-2011 Lived in Thailand, almost symptom free.
Now only eat Thai food.
Easy to cook - gluten/dairy free - delicious

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#2 Di2011

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Posted 11 May 2012 - 01:52 AM

Number One: NEVER apologise for long posts on this forum. The more information the less questions we need to ask you and the more information/advice posters can give you.
Number Two: I am a 39 y/o disliker of boy bands but The Wanted's "All Time Low" is my current favourite song. I was glutened a couple of days ago after 7 (yes SEVEN totally gluten free months) The crux of the song is 'how do you' get out of an all time low. That is where I've been the last few days. Totally miserably. I've been listening to it constantly, all day and tonight I got it. Well not quite all day and night but lots. Gluten is my poison and I've known that for a long time but I couldn't work out what got me. Tonight I realised that my sons 3 days of vomiting a couple of weeks ago was rice related (I didn't eat the brand/product that day). My problems started three nights ago with exactly the same product. My son didn't eat that night hence no problems with him. Sounds a bit stupid but my 'get out of an all time low' was figuring out what hit us both.
Keep a diary - I'm not a diary type so I keep a mental check. Stick with what works for you: I am on meat/veg/fruit and ONLY Thailand rice products ((the newly introduced rice was Australian - where I live.. dumb of me to introduce but how are we ever going to know.. going back to Thai only rice products. Thank you Asia))
By the way I listen to The Wanted 'Glad you came' to try and cheer me up after the more depressing All Time Low. Music works for me. I hope that in a few more days though that boy bands won't be such a necessity to my sanity.

Here are the big questions:
1) If gluten only damages the villi, how can occasionally being glutened cause so much discomfort?

Think of gluten as a poison. Once the villi is healed the gluten is still poison and will reverse the repair.

2) Why did I not have any severe reactions so far, have I really not been glutened?

This is a less understood one. So many variables..and some debate about their being a range over which people are gluten intolerant. ie Celiac is damaged villi but some of us might not have visible damage but the vomit/bloating/skin/neuro/etc/etc/etc are the 'in-between' symptoms of the same disorder. Hopefully another member will be able to help us on this one.
3) Are reactions not showing because I got rid of my bacterial and parasite overgrowth first?
4) Does my refusal to use any form of dairy have any influence?

Three and four are out of my "expertise" I'll definitely leave this to others
5) Or have I just been lucky so far and serious problems are yet to appear?
All I have to say on this question is be careful. Do you understand/Have you read and researched others experience with gluten related disorders? Hopefully some of our forums 'survivors' will give you a word of warning.


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#3 Di2011

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Posted 11 May 2012 - 02:21 AM

1) If gluten only damages the villi, how can occasionally being glutened cause so much discomfort?

I'm not one of the technical types on here but I should give a bit more of my experience here..
I've had Dermatitis Herpetiformis (DH) in some form all my life (in hindsight) but head-to-toe since I quit working at a bakery 12 months ago.
I have always avoided glutens (subconsciously). Didn't like breakfast, pizza, pasta, sandwich etc. Loved Asian foods.
But I was always itchy scratchy, bloated, constipated or running to the toilet. All mild enough that I never went to see anyone about it and thought it was 'just me'.
When my DH went head to toe after 9months of working in a bakery I knew within days that gluten was the culprit. A lot longer research to determine the DH was DH etc.
What I have learnt from this forum and other research is that some intolerances seem to be cumulative ( I am salicylate intolerant but it is cumulative. One bit of corn or one raisin and I am okay. A bit of popcorn and a very small handful of raisins the next day and I will maybe start to see the effects ) Some poisons are like this.
Unfortunately for many of us gluten seems to be the opposite. One bit/bite and it is like a killer dose of poison. Well.. maybe not killer but certainly debilitating. Within a few hours of my recent glutening I felt yuck. Wondered where the nearest toilet was. A half day to and from the toilet (vomiting for my son, D for me). My DH has struck back on my hands and wrists today.
So I guess my message is..
Gluten for many of us is not just about the villi..
Many of us have a range of reactions to gluten. I have DH (considered 100% celiac) but I also have classic allergy reactions. I have semi-mild GI and mild neuro reaction to gluten (celiac not allergy) but I can't tolerate walking through the bread area of a supermarket.
So many mysteries for what will be in a few decades a "BIG" medical discovery
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#4 dilettantesteph

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Posted 11 May 2012 - 03:42 AM

I don't think that most people continue to have problems. It's just that if you do have problems you seek out places like this to try to figure out what is going on.
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#5 bennl1

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Posted 11 May 2012 - 04:18 AM

I don't think that most people continue to have problems. It's just that if you do have problems you seek out places like this to try to figure out what is going on.

Thanks, that is a reassuring answer. :)
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Ben (58)

Diagnosed Celiac 12-Apr-2012
Dairy intolerant, B12 malabsorption, Bile acid malabsorption.
Osteopania
Lifetime of misdiagnoses.

2008-2011 Lived in Thailand, almost symptom free.
Now only eat Thai food.
Easy to cook - gluten/dairy free - delicious

#6 CeliacAndCfsCrusader

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Posted 11 May 2012 - 03:29 PM

Here's my take. Get yourself to a GOOD allergist and get tested for EVERYTHING. You will most likely find some things that you had no idea were a problem.

Don't cheat. If you are indeed Celiac, you're foolish to intentionally consume what your body considers poison.

My symptoms were prevalent for about 20 years, but it was never an equally symptomatic day. Some days were filled with no reaction and others waking in the middle of the night doubled over. Same daily diet, different reactions each day. (That's one of the reasons why getting diagnosed is a problem, many of us asked the right questions over...and over....and over, and the medical community never had a clue.

As far as yeast, overgrowth, deficiencies, etc, there are many different opinions. IMO, the best thing is to eliminate gluten entirely forever. Then, get allergy tested and avoid those foods and perhaps the families of those foods.

Your body WILL change. Some lose weight, some gain. Some feel better within days, some in years, some have permanent damage.

The only way to ever assure YOUR best results is to eliminate the gluten forever. Good luck.

PS: It's almost 6 years for me and I haven't cheated once. I have been c/c'd, it will happen. I feel tons better, but still have some issues (but at least I know I've done all I can).
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#7 bennl1

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Posted 12 May 2012 - 12:15 AM

Get yourself to a GOOD allergist and get tested for EVERYTHING. You will most likely find some things that you had no idea were a problem.

Don't cheat. If you are indeed Celiac, you're foolish to intentionally consume what your body considers poison.

Already had full allergy tests.
Skin sensitive for Iodine and resin (wood).
No food allergies found. (Dairy intolerance was not tested as I know that already and regardless any test outcome, I hate the stuff, so will not eat it).

If you are indeed celiac... I've been diagnosed through biopsy, so yes I am.

Don't cheat... Of course not. Why would I?
By sticking to Thai food only, I have a gluten/dairy free diet that is plain normal food to about 60 million people.
So pretty sure I'm getting all the necessary nutrients.


What I'm more interested to know is:
Are there any other people who

1) went on an anti-bacterial/parasites overgrowth diet before going to just gluten free?
And if so, how is their experience?

2) stay off dairy 100%? How is their experience towards getting more problems after going gluten free?

3) do not eat a gluten free version of a "Western diet", but switched to the eating habits of another culture which is naturally gluten free?
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Ben (58)

Diagnosed Celiac 12-Apr-2012
Dairy intolerant, B12 malabsorption, Bile acid malabsorption.
Osteopania
Lifetime of misdiagnoses.

2008-2011 Lived in Thailand, almost symptom free.
Now only eat Thai food.
Easy to cook - gluten/dairy free - delicious

#8 Skylark

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Posted 12 May 2012 - 08:24 AM

Here are the big questions:
1) If gluten only damages the villi, how can occasionally being glutened cause so much discomfort?
2) Why did I not have any severe reactions so far, have I really not been glutened?
3) Are reactions not showing because I got rid of my bacterial and parasite overgrowth first?
4) Does my refusal to use any form of dairy have any influence?
5) Or have I just been lucky so far and serious problems are yet to appear?

1) Inflammation is uncomfortable. Gluten triggers inflammation.
2) Not all celiacs have severe reactions to a single exposure to gluten. Some have to get autoimmune damage before they feel ill.
3) I doubt it.
4) If dairy makes you feel ill or causes trouble, don't eat it. Eating things that make you feel ill have bad long-term effects on your health.
5) The people here are largely a self-selected group of celiacs who are having ongoing problems and need support. You are not seeing the hundreds of thousands of healthy celiacs who are doing great on the diet and don't need support or help.
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#9 MitziG

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Posted 12 May 2012 - 08:00 PM

I am guessing that you are more of a "silent celiac" and had the parasite infestation not disrupted your gut function, it may have been some time before you got sick enough to be diagnosed.

Very frequently, silent celiacs done have a noticeable physical reaction to gluten. I was a silent celiac, and was tested only because my son was dx. Yet despite not having any major intestinal issues, I had total villous atrophy, and marked damage visible to the doctor during the endoscopy to the extent that he dx me even before the biopsy came back. My point is, celiac can be destroying your intestines, yet you can be completetly unaware. My only "textbook" symptom was unrelenting fatigue.

Now that I have been gluten-free for over a year, I DO react with vomiting and diarrhea to small amounts of gluten. The reason is not that I have gotten sicker, it is that my immune system has recovered enough to muster a very active effort to rid my body of "poison"!

I think mort celiacs don't develop more problems, it is more that by the time they were finally dx, their bodies had been malfunctioning on many levels. That doesn't just all go away when you go gluten-free. And often, they had developed additional sensitivities before they were dx, they just weren't aware of it. Once you eliminate gluten, you realize you can feel better, and you want to keep chipping away at remaining issues which may be aggravated by food sensitivities.

Anyway, if you are feeling good now, I would not be too worried. Most of us enjoy much better health after our dx!
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#10 GladGirl

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Posted 14 May 2012 - 02:28 AM

I understand your questioning, I have been doing this myself beind newly diagnosed in my late adult years. I have been reading up on so many clinical studies about this autoimmune disease. One link I would like to share that explains the gliadin process of our problems is about the "leaky gut syndrome":http://scdlifestyle.com/2012/02/how-gluten-causes-celiac-disease/

Because my liver has been affected over the years by this disease and caused my gall bladder a slow "death", not to mention other variable symptoms, I have questions!

As I understand it, my body has been storing "fat" in this process as a defense against the "leaky gut", storing it in my liver, and other parts of my body. Also inflammation everywhere! Being gluten free for two months now has definitely changed my functionality. Can you imagine over 50 years of being "poisoned" by gluten and the damage??!! Now, I sleep better, I can move easier and in less pain in the joints! Yes, I do wonder if there is a cross roads coming, but believe me, I am keeping watch.

Someone else has said "if it works", good; if not keep trying. :)
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