Diagnosed with Celiac 4 months ago, never realized any symptoms

[Esmanee]

Hello,

I am new but wanted to hear some other peoples' experiences. I went to the doctor about 6 months ago because I was having stomach pain and after a blood test and endoscopy they quickly diagnosed me with celiac. This was a huge surprise to me because I never experienced symptoms I thought were out of the ordinary. I thought if anything I might be lactose intolerant, and eating eggs makes my stomach hurt, but I never connected any poor feelings to gluten, and I'm sure this is just because gluten was in nearly everything in my old diet.

Since being diagnosed I have of course completely changed my eating habits, but I don't seem to notice any real difference either way. The only thing that has changed a bit for the better are my bowel movements. But that being said, I really can't tell when I've been "glutened" or if I've eaten something that had cross contamination. It all feels the same to me either way. Because of this it's hard for me to justify completely cutting out eating at restaurants that aren't celiac friendly and products that "might be processed in a factory that produces wheat products." I'm not even sure what things "trigger" me because there seems to be no "result" of that trigger. Is this something that people can only identify AFTER they've been on the diet for years?

Is it possible I just have "mild" celiac and I don't have to worry as much? Or maybe I don't have enough damage to my intestines that I don't notice the effects as much?

I know I should try being extremely careful for a little while (a few months?) but it's tough because I don't really have a full kitchen. It honestly feels to me like the diagnosis is wrong because my symptoms seem to be nonexistent, so it's easy for my mindset to shift to "well, I can just eat around the noodles" etc. because I know I won't "feel" any effects even though I'm sure it would cause damage. 

Does anyone have any advice? Should I just go all in and be extra careful for a period of time and then see how that affects me? Any ideas on how long I'd have to do that for?

 

Thank you!

[Scott Adams]

Hi @Esmanee, welcome to the forum!

Many people with celiac disease are asymptomatic, but this unfortunately does not mean that they won't face the same long-term health risks as those who have severe symptoms. This study might explain why some have symptoms and some don't, but it also shows that the negative intestinal changes are still seen in both groups:

 If you must eat out (like I do), be sure to still emphasize a gluten-free meal to the restaurant staff, and consider using GliandinX (they are a sponsor here), as there are quite a few studies on AN-PEP's enzymes' ability to break down small amounts of gluten in the stomach, before it reaches you intestines.

[trents]

Esmanee, welcome to the forum!

First, it takes time for healing of the villi that line the small intestine. It can take over a year, even if you have been eating totally gluten-free. And from your own words, it sounds like you have been cutting back on gluten but not totally eliminating it. Every time you consume gluten, even a small amount or for some, even a trace amount, the healing process experiences a setback. Until there is substantial healing in the villi, you may not feel any better. Several recent studies have shown that most people who claim to be eating gluten-free or actually eating lower gluten because they are ignorant of or are disregarding cross contamination. These studies also show that most of those same people are still dining out. There is much more to eating gluten-free than eliminating the macro sources of gluten such as bread and pasta. Gluten is found many products you would never suspect to find it in such as most canned soups and soy sauce, medications and supplements. Many or most eateries who offer gluten-free menu items do not practice cross contamination safe guards such as not cooking gluten-free foods on the same surfaces, pots, pans  and vats as they do gluten containing foods or slicing them with separate knives. A big part of successfully eating gluten free is learning how gluten is disguised by food industry terminology and how it enters your diet through cross contamination. If you eat out, you must learn to choose menu items carefully and to ask questions of the kitchen staff about how they prepare the food to avoid CC. You even need to be prepared to ask them to cook your food in separate pans and the like. Learn to order things that are not likely to experience cross contamination. For instance, instead of ordering a scrambled egg, order a hard boiled one. Or, ask for steamed broccoli. I think you get my drift. Learn to turn the odds in your favor by what you order and/or giving directions about it's preparation. We call it being appropriately assertive. A good place to start is to say something to the waiter and/or the chef, "I have a gluten-related medical condition. Can you help me make some wise choices?" Don't use the term "celiac disease." It's very unlikely they would have ever heard of it.

"Is it possible I just have "mild" celiac and I don't have to worry as much?" No! Don't let yourself think that way.

In answer to your question about being misdiagnosed, that is possible. Certain medications and other GI diseases can also cause villi damage. Do you know or can you find out exactly what blood tests were run? Some are more specific for celiac disease than others. But because you have been diagnosed with both the blood antibody tests and the endoscopy/biopsy, I seriously doubt that celiac disease is not really the problem.

The other thing I would make you aware of is that most people with celiac disease develop, over time, other food intolerances as well. Many celiacs experience distress when consuming dairy, soy, corn or eggs but it can be almost anything. Celiac disease causes dysfunction in the immune system because of "leaky gut" syndrome that typically leads to an assortment of allergies/intolerances. So, if that is the case with you, there may be other foods that are causing problems with your tummy besides gluten containing ones.

 

Edited February 11, 2021 by trents

[Esmanee]

44 minutes ago, Scott Adams said:

Hi @Esmanee, welcome to the forum!

Many people with celiac disease are asymptomatic, but this unfortunately does not mean that they won't face the same long-term health risks as those who have severe symptoms. This study might explain why some have symptoms and some don't, but it also shows that the negative intestinal changes are still seen in both groups:

 If you must eat out (like I do), be sure to still emphasize a gluten-free meal to the restaurant staff, and consider using GliandinX (they are a sponsor here), as there are quite a few studies on AN-PEP's enzymes' ability to break down small amounts of gluten in the stomach, before it reaches you intestines.

Really helpful info, thank you! I've definitely read that it could just be asymptomatic, I guess that's just the category I fall into. 

[Esmanee]

5 minutes ago, trents said:

Esmanee, welcome to the forum!

First, it takes time for healing of the villi that line the small intestine. It can take over a year, even if you have been eating totally gluten-free. And from your own words, it sounds like you have been cutting back on gluten but not totally eliminating it. Every time you consume gluten, even a small amount or for some, even a trace amount, the healing process experiences a setback. Until there is substantial healing in the villi, you may not feel any better. Several recent studies have shown that most people who claim to be eating gluten-free or actually eating lower gluten because they are ignorant of or are disregarding cross contamination. These studies also show that most of those same people are still dining out. There is much more to eating gluten-free than eliminating the macro sources of gluten such as bread and pasta. Gluten is found many products you would never suspect to find it in such as most canned soups and soy sauce, medications and supplements. Many or most eateries who offer gluten-free menu items do not practice cross contamination safe guards such as not cooking gluten-free foods on the same surfaces, pots, pans  and vats as they do gluten containing foods or slicing them with separate knives. A big part of successfully eating gluten free is learning how gluten is disguised by food industry terminology and how it enters your diet through cross contamination. If you eat out, you must learn to choose menu items carefully and to ask questions of the kitchen staff about how they prepare the food to avoid CC. You even need to be prepared to ask them to cook your food in separate pans and the like. Learn to order things that are not likely to experience cross contamination. For instance, instead of ordering a scrambled egg, order a hard boiled one. Or, ask for steamed broccoli. I think you get my drift. Learn to turn the odds in your favor by what you order and/or giving directions about it's preparation. We call it being appropriately assertive. A good place to start is to say something to the waiter and/or the chef, "I have a gluten-related medical condition. Can you help me make some wise choices?" Don't use the term "celiac disease." It's very unlikely they would have ever heard of it.

"Is it possible I just have "mild" celiac and I don't have to worry as much?" No! Don't let yourself think that way.

In answer to your question about being misdiagnosed, that is possible. Certain medications and other GI diseases can also cause villi damage. Do you know or can you find out exactly what blood tests were run? Some are more specific for celiac disease than others. But because you have been diagnosed with both the blood antibody tests and the endoscopy/biopsy, I seriously doubt that celiac disease is not really the problem.

The other thing I would make you aware of is that most people with celiac disease develop, over time, other food intolerances as well. Many celiacs experience distress when consuming dairy, soy, corn or eggs but it can be almost anything. Celiac disease causes dysfunction in the immune system because of "leaky gut" syndrome that typically leads to an assortment of allergies/intolerances. So, if that is the case with you, there may be other foods that are causing problems with your tummy besides gluten containing ones.

 

Thank you for your honest response! I am doing the best I can under the circumstances; there have been a few blatant slip ups (ate a slim jim without even thinking about it.. yikes.. I did the same thing when I first became a vegetarian years ago lol..) but I have been reading labels and researching the weird exceptions. But like I said, I have not been as careful with cross contamination because I've read (perhaps from incorrect sources) that some people even with celiac don't react to cross contamination; though I guess again even if they don't react it must cause damage either way. I think the problem I'm encountering is I don't even KNOW if there's been cross contamination in some cases to be able to avoid it, and I guess that just means I need to be super super careful for a while until I can figure out how to tell. 

Thanks again and those are some really great tips about ordering items that are less likely to have been contaminated!

[trents]

Esmanee, 

It can all be overwhelming at first. We who are celiac "veterans" can all attest to that. There is a big learning curve and you will inevitably make mistakes. But you are on the right track. After a while, it is like you develop this sixth sense as to where gluten might be found in the food industry.

And you are correct. Many celiacs do not experience symptoms when encountering cross contamination but that does not mean the villi experience no harm. So that fact can add to the learning curve. It's easier in some ways if you are super sensitive to gluten. One thing you will likely find out is that the longer you have been off gluten, the more sensitive you will become. The industry standard for labeling food gluten-free is 20 parts per million (ppm) of gluten but some celiacs react even to that much. Also, you will see "Gluten Free" on some labels and "Certified Gluten Free" on others. Certified Gluten Free is a more trustworthy declaration. 

[Jim Rockford]

If your only symptom was “stomach pain” then that should improve with a strict gluten free diet. Sometimes the doctor will do  a follow-up (tTG)-IgA test to see if the diet has been effective. 
 

Before my diagnosis my only symptom was acid reflux. Now that is gone but I really get affected by accidental gluten ingestion much more than before. 

When diagnosed it seemed impossible and horrible to adopt a gluten free diet but, it was easy and you get used to it. There has never been a better time to gluten free.

Everyone has to choose how diligently to follow a gluten-free diet but IF you have Celiac you WILL feel better not eating any gluten.

[Lily08]

5 hours ago, Esmanee said:

Hello,

I am new but wanted to hear some other peoples' experiences. I went to the doctor about 6 months ago because I was having stomach pain and after a blood test and endoscopy they quickly diagnosed me with celiac. This was a huge surprise to me because I never experienced symptoms I thought were out of the ordinary. I thought if anything I might be lactose intolerant, and eating eggs makes my stomach hurt, but I never connected any poor feelings to gluten, and I'm sure this is just because gluten was in nearly everything in my old diet.

Since being diagnosed I have of course completely changed my eating habits, but I don't seem to notice any real difference either way. The only thing that has changed a bit for the better are my bowel movements. But that being said, I really can't tell when I've been "glutened" or if I've eaten something that had cross contamination. It all feels the same to me either way. Because of this it's hard for me to justify completely cutting out eating at restaurants that aren't celiac friendly and products that "might be processed in a factory that produces wheat products." I'm not even sure what things "trigger" me because there seems to be no "result" of that trigger. Is this something that people can only identify AFTER they've been on the diet for years?

Is it possible I just have "mild" celiac and I don't have to worry as much? Or maybe I don't have enough damage to my intestines that I don't notice the effects as much?

I know I should try being extremely careful for a little while (a few months?) but it's tough because I don't really have a full kitchen. It honestly feels to me like the diagnosis is wrong because my symptoms seem to be nonexistent, so it's easy for my mindset to shift to "well, I can just eat around the noodles" etc. because I know I won't "feel" any effects even though I'm sure it would cause damage. 

Does anyone have any advice? Should I just go all in and be extra careful for a period of time and then see how that affects me? Any ideas on how long I'd have to do that for?

 

Thank you!

Hi, I hope you're doing well and coping ok with the new diagnosis. I have had a very different experience as I was diagnosed with Coeliac when I was only two and a half years old. I have very hypersensitive Coeliac Disease to the extent that even minor cross contamination can make me very ill (my poor boyfriend has to constantly worry about washing his face if he's eaten bread).

Be very careful with eating gluten or something that might be contaminated, the fact that you have an official diagnosis means that you probably have Coeliac, they've run the right tests so it should be the case. It may not feel too bad when you eat gluten but it can do serious damage to your organs without you realising, especially if your body is used to dealing with the pain (this will have come from you being diagnosed later in life). Once you've been completely gluten-free for a while you should notice some serious benefits, but it will take a while for your body to fully recover, especially after all the damage which it has been through. 

I hope this is somewhat helpful, and if you need any tips let me know!

[RMJ]

I understand your dilemma. I was also diagnosed without having digestive symptoms.  I was tested because I have the genetic predisposition plus migraines.  The only way I can tell if I’m being careful enough is through follow-up blood testing every 6 to 12 months.  I started by reading labels/menus and avoiding obvious gluten.   My antibody levels went down but were still above normal. Then I only ate processed foods labeled gluten free.  Antibody levels down further but some still above normal. The only way I could get all my levels down to normal was to be super careful, only eating naturally gluten free and certified gluten free foods. Everyone is different - hopefully you won’t have to go to this extreme!

Although I wasn’t diagnosed due to symptoms, once I finally got my antibody levels in the normal range I discovered that I just felt better, for example, less fatigue and fewer naps.

[GodsGal]

Hi! My experience with diagnosis was a lot like yours. I was diagnosed 1 yr ago. At first I thought I was asymptomatic as well, with just a little abdominal pain that I couldn't figure out. But as I have been healing, I have realized that other things that I just thought were normal for me have started to improve. (Like that pesky little skin rash that disappeared.) So, you do have to be super careful. I know that it is really hard.

Another thought...are you still eating oats? Some of us who are celiacs can't digest oats, even the gluten free ones.  

Also... here in the USA, something that is labelled as "Gluten Free" doesn't necessarily mean that it is truly free of gluten. The Food and Drug Administration permits companies to label their food products as gluten free if it tests at or below 20 ppm.😖 Read labels carefully. 

If I have questions about whether or not something is safe, I will look it up online or call the manufacturer. Most companies I have reached out to have gladly given me the information I need. I am always leery of companies that reply, "If there are any gluten ingredients, we will print it on the label." I always look for gluten free certification trademarks. 

Have you changed your toothbrush yet? And is your toothpaste gluten free? Are you still licking envelopes? Are your lotions and cosmetics gluten free? I know that there is debate about whether or not gluten free soaps, shampoos, and conditioners are necessary. But I feel that they have been helpful for me. Especially for my sensitive skin.

I hope this helps! I know how hard it can be, especially as you are starting out. You can do it!

 

 

 

 

 

[trents]

A little clarification here. All cereal grains contain gluten but each grain's gluten is different from the others'. The gluten in wheat, barley and rye is almost identical and that is why these three grains are lumped together as those that cause problems for celiacs. Oat gluten is more dissimilar than those other three but close enough in chemical structure to still cause a reaction for about 10% of celiacs. And digestion is not the issue, depending on how you define digestion I suppose. Inflammation is the issue. The body interprets the gluten in these 3 or 4 grains as an invader and attacks it as it comes in contact with the cells that make up the lining of the small bowel. 

[GodsGal]

Thanks for the clarification! Still learning myself.