Trying To Figure Out If I Have Celiac

[amaterasu2915]

I have been reviewing many of the posts and have been amazed at how much some peoples' struggles and symptoms match my own. On the other hand, my issues have some unique twists to them as well, so I am not quite sure if I have celiac disease, or perhaps some other disorder. I would really enjoy hearing peoples' thoughts on my symptoms, whether they can relate and what they have been through, and any advice or tips people would have on getting diagnosed or dealing with my problems.

As background, I am a 40-year old man who went through maybe 25 very healthy and happy years, but there has been a steady, slow decline since then, and it has become particularly severe in the last 5 years. Here are my symptoms:

1. Fatigue. The fatigue is crippling. Maybe 4 or 5 years ago I started waking up in the middle of the night and didn't feel very well rested. It's gotten worse and worse. During the worst nights I wake up 3-4 times or just drift in and out of sleep. A lot of times I feel sort of restless, agitated, even slightly feverish, with some slight numbness/tingly sensations; this would make it difficult to fall asleep. The fatigue is so bad, I've essentially cut work to half time, even I used to love to work and interact and be productive. On many days, I have to sneak off to my car and lie down. Often, I can't think, write or concentrate. I've lost a lot of my interests and passions. It's a stunning turnaround, because normally I love to read, meet people, write, etc. I have had a sleep study at Stanford and was diagnosed with moderate sleep apnea. The amount of REM I get is very low. I have tried the traditional remedies (CPAP, etc.) They help some, but not nearly enough.

2. Tingling/Numbness/Aches. I described this a little above. I perpetually have a very slight numbness/tingling, particularly in my finger tips and somewhat in my feet. Sometimes I feel a sensation of prickliness or tingling that radiates down my legs. Sometimes I feel almost a heat sensation. I think it makes it hard for me to sleep at times, despite the fact that I am very tired. I also have peculiar aches in the middle of my back.

3. Bloating. I have been bloated slightly for at least 6 years, but I always thought it was just me getting fat and older. In the last 6 months, though, the bloating had become really noticeable and uncomfortable. I perpetually feel at least somewhat bloated. When I eat a lot or at certain places, I can feel extremely bloated (particularly when I ate recently at a Chinese buffet.) When I get bloated, I don't get cramps, but the distention is extreme, it looks like I am pregnant. It is the bloating in the last 6 months, actually, that made me look more seriously at celiac/food intolerance/GI issues as the source of my many problems; before I thought it was all stemming from sleep apnea.

4. Reaction to foods. Largely because of my reviews of posts in this forum, I have been on a very strict diet for the last week. No gluten, eggs, soy, etc. I changed my shampoo and soap to gluten-free formulas. My diet is limited to fish, olive oil, rice, and cooked spinach. No coffee, sugar, milk, sorbitol. I actually do feel somewhat better. I sleep 5 hours at a time rather than 2-3. I still feel the tingling, but it seems reduced. But I still am very tired, though, far far from fully recuperated. Interestingly, I did a couple days ago try out some furikake on my rice (a Japanese mix of seaweed, sesame seed and bonito, a dried, fermented fish.) The ingredients seemed innocent enough, but literally 30 minutes after I took it, I got extremely bloated, the tingling sensations increased. It made me wonder if the furikake had some gluten or some other problematic substance in it (sort of like soy sauce, which is fermented with wheat.)

I have been skin-tested for allergies, which found lots of pollen-based allergies, and a few moderate food ones -- peanuts, soy. But the funny thing is, I do not have huge breakouts, sneezing, or any of the other typical symptoms of allergies.

I have not methodically tested myself against any foods (other than the furikake, basically by accident.) I was thinking that I might learn a lot if, while on this strict diet, I suddenly tried some gluten. In part, I have not done so yet since I am afraid of giving up the small gains I have had so far.

I did have a celiac blood test, which came out negative, although I realized afterward that I was already greatly reducing my gluten intake in the months leading up to the test due to some dietary experimentation, so that may make the test result untrustworthy. I could ditch my diet, gluten myself up, and retake the test, and will probably end up doing so at some point, perhaps after I have tested for all other issues.

I guess the questions looming in my mind are:

1. What do I have? Celiac, food intolerance, parasites, leaky gut?

2. How do I properly assess what I have? On the forums, people have talked about getting stool samples, blood tests, celiac tests. My family doctor is a nice guy, but he didn't seem to know what to do. Although celiac testing is well-recognized, I get the sense that other issues like leaky gut, parasites, candida etc. are not as well-recognized, so perhaps he doesn't believe in or is not familiar with these issues.

3. Does anyone have recs for good gastroenterologists or GI specialists in the Bay Area? I've blown a fair amount of money on an acupuncturist and a natural medicine doctor. I don't think that did much for me; it seems so hard to find someone who can competently deal with these issues and walk me through the process of pinpointing my condition.

4. Any other thoughts, tips, reflections would be very much appreciated.

My main worry is the extreme fatigue and brain fog. It has destroyed a lot of what I used to love, put a burden on my family, and frozen my career. I need very badly to find an answer to my problems. Thank you for reading this and for your feedback.

[GlutenFreeManna]

I could have written you post 6 months ago. My primary symptoms were fatigue, tingling in my legs and arms, muscle weakness, muscle pain and brain fog. I went through multiple sleep studies that found nothing. I started getting the bloating and stomach problems last. First, as far as the blood test results go they are not very accurate. Many people get a false negative on the blood test but have a positive reaction to the diet. If the diet helps you you don't need a blood test to tell you what your body has already told you. The stool tests you are reading about come from a company called Enterolab. They are somewhat controversial on here, but you can take the stool test without going back to eating gluten. Another test you can get is a gene test, which will not tell you if you have celiac but will tell you if you are at greater risk for having it. I have seen at least one person post on here they were diagnosed by their doctor based on the genetic test and response to diet. Others have been diagnosed by a response to diet. Many of us end up self diagnosing via diet because we can't find a knowledgeable enough doctor.

[Skylark]

I'm so sorry to hear about the fatigue and depression. I've been through that and it's terrible.

Your neuropathy sounds diabetic. It *could* be gluten, but there is growing evidence that people who have high spikes in blood sugar after meals tend to develop neuropathy. I have a friend with neuropathy who picked up a drugstore glucose meter and started playing with it. Her fasting blood sugar is normal. Sure enough, she has fairly high (not quite diabetic-high) sugar spikes after meals if she eats a lot of starch. She has gone on a low-carb diet and feels a lot better. She has also eliminated gluten, as eating wheat made her feel awful even though she is not celiac.

Sleep disorders can also be associated with blood sugar problems. The poor sleep will give you brain fog, fatigue, depression, etc. A lot of celiacs suffer from depression and poor sleep because of iron and B12 deficiencies from malabsorption. We're also prone to thyroid problems, which can cause serious fatigue and brain fog. The "couch potato" feeling you describe where you have lost interest in activities is often a sign of thyroid disease. You definitely need to ask for thyroid tests. Be aware there is a test called TRH releasing that is only done if your other thyroid blood tests are OK and your doctor still suspects thyroid trouble. Here's a checklist for thyroid problems.

Open Original Shared Link

The Chinese buffet problem and your reaction to furikake sounds like MSG sensitivity. Gluten could also do it. Some furikake mixes have soy sauce that contains wheat, others have MSG. Also lactose intolerance and fructose malabsorption can also cause bloating. Doctors can test for those with a challenge and hydrogen breath test.

So, there's some ideas for you to look at. Hopefully you'll get more as other people post.

[amaterasu2915]

I could have written you post 6 months ago. My primary symptoms were fatigue, tingling in my legs and arms, muscle weakness, muscle pain and brain fog. I went through multiple sleep studies that found nothing. I started getting the bloating and stomach problems last. First, as far as the blood test results go they are not very accurate. Many people get a false negative on the blood test but have a positive reaction to the diet. If the diet helps you you don't need a blood test to tell you what your body has already told you. The stool tests you are reading about come from a company called Enterolab. They are somewhat controversial on here, but you can take the stool test without going back to eating gluten. Another test you can get is a gene test, which will not tell you if you have celiac but will tell you if you are at greater risk for having it. I have seen at least one person post on here they were diagnosed by their doctor based on the genetic test and response to diet. Others have been diagnosed by a response to diet. Many of us end up self diagnosing via diet because we can't find a knowledgeable enough doctor.

Thank you so much for your comments, glutenfreemanna. I am encouraged by what you told me -- your road really has matched mine, even up to the sleep studies! I was wondering -- for you, after you went gluten-free, how long did it take you to feel energetic again? Or are you still struggling with fatigue?

[amaterasu2915]

I'm so sorry to hear about the fatigue and depression. I've been through that and it's terrible.

Your neuropathy sounds diabetic. It *could* be gluten, but there is growing evidence that people who have high spikes in blood sugar after meals tend to develop neuropathy. I have a friend with neuropathy who picked up a drugstore glucose meter and started playing with it. Her fasting blood sugar is normal. Sure enough, she has fairly high (not quite diabetic-high) sugar spikes after meals if she eats a lot of starch. She has gone on a low-carb diet and feels a lot better. She has also eliminated gluten, as eating wheat made her feel awful even though she is not celiac.

Sleep disorders can also be associated with blood sugar problems. The poor sleep will give you brain fog, fatigue, depression, etc. A lot of celiacs suffer from depression and poor sleep because of iron and B12 deficiencies from malabsorption. We're also prone to thyroid problems, which can cause serious fatigue and brain fog. The "couch potato" feeling you describe where you have lost interest in activities is often a sign of thyroid disease. You definitely need to ask for thyroid tests. Be aware there is a test called TRH releasing that is only done if your other thyroid blood tests are OK and your doctor still suspects thyroid trouble. Here's a checklist for thyroid problems.

Open Original Shared Link

The Chinese buffet problem and your reaction to furikake sounds like MSG sensitivity. Gluten could also do it. Some furikake mixes have soy sauce that contains wheat, others have MSG. Also lactose intolerance and fructose malabsorption can also cause bloating. Doctors can test for those with a challenge and hydrogen breath test.

So, there's some ideas for you to look at. Hopefully you'll get more as other people post.

Thanks so much, Skylark. You've given me a lot to think about it. Based on your posting, I went right out and got a glucose blood testing device. I did get a fasting glucose blood test and it came in normal. But I wonder if my glucose blood level spikes unusually high, say, 2 hours after eating. I'll watch what happens there.

I did do a thyroid stimulating hormone (TSH) test a year ago, and came well within normal parameters. But I'll bring it up with my doctor nevertheless.

I have my first meeting with a gastroenterologist tomorrow. I'll bring up the stool tests then and see what he says. Thank you again for all of your help and for sharing your experiences!

[Skylark]

My friend started taking 15-minute readings after a sugar challenge. She read labels and tried to eat about 75g of sugar with a mix of fruit juice and a sweet cereal. Normal range is less than 140, pre-diabetic is 140-200, and diabetic is strictly defined as over 200 after 2 hours. My friend's sugar jumps fast, climbing to 160-170 within an hour. She has done a lot of research and her reading suggests the neuropathy can appear with impaired glucose tolerance that may not meet the strict definition of diabetes. Her feet were so painful they kept her awake at night and she couldn't wear closed shoes. It's much better for her now that she's stabilized her blood sugar.

Open Original Shared Link

Open Original Shared Link

If all is fine with the sugar, gluten intolerance is another big cause of ideopathic neuropathy.

Good luck sorting all this out. I feel so bad for you with the fatigue because I know how awful it is.

[GlutenFreeManna]

Thank you so much for your comments, glutenfreemanna. I am encouraged by what you told me -- your road really has matched mine, even up to the sleep studies! I was wondering -- for you, after you went gluten-free, how long did it take you to feel energetic again? Or are you still struggling with fatigue?

That's hard to answer because I didn't just go gluten free to start with. I had been reading a lot about food intolerances as well as gluten. Before that I went through so many tests in addition to the sleep studies--I had and MRI, a heart monitor, tons of bloodwork (tests for everything from Lupus to Thyroid Disease). I got frustrated with the doctors not finding anything. Finally, I decided to do an elimination diet to figure out if certain foods were bothering me. I eliminated all carbs, all sugar, all dairy, all soy, all legumes and most fruit to start. For a month I ate only grilled chicken or beef and steamed vegetables (minus potatoes and corn). I only used olive oil for cooking. I did use honey as a sweetener and kosher salt and black pepper as well as lemon to season my food, but no other seasonings. I also continued to take a multi-vitamin. I felt better after two weeks on the elimination diet. I started to have surges of energy, although I was still fatigued most of the day and I started to sleep somewhat better. Then I started to add things in one at a time to see my reaction. I had a classic stomach reaction to wheat, rye and barley products--in fact my gastro problems were worse than they had been before or at least they seemed worse. I also felt tired for days after having anything with gluten.

I also found that soy made me tired and made my joints and muscles ache. IMO, Soy messes with my thyroid. Do a google search for soy and thyroid disease and you will find all kinds of links discussing the connection. Thyroid diseases run in my family so I have had my thyroid checked every year for the past few years but the tests never came back abnormal enough to be diagnosed with anything. It's just my theory, but I think soy negatively affects my thyroid and therefore throws my whole body into a tired mess. In addition to the fatigue and muscle pain I get with soy, I also think it makes me more emotional and anxious.

I had to give up most dairy too. Dairy made me have asthma attacks, allergies and chronic sinus infections, which made it even harder to sleep. Who can sleep when you're fighting just to breath? I still have allergies to dust pretty bad, but I have hardly had any seasonal allergies and I have not had a sinus infection since around February (when I last had large quantities of dairy). I also had some bloating with dairy, but the breathing problems were the worst. I attribute this to the lactose mostly. Now it has been 6 months and I can eat yogurt, butter and low-lactose cheese without many problems, but if I eat regular ice cream, drink milk or eat too much cheese in a day I start having stomach pains and difficulty breathing.

I had to eliminate foods with yeast because I would break out in skin rash when I had yeast. I don't know if this was candida or what, but after six months yeast-free I am now starting to experiment with some gluten free yeast breads and I have not had a rash again.

The other foods in my signature (Shellfish, pork and mushrooms) are true food allergies that I have had for a long time. These are the traditional types of allergies that would make my throat close up and send me to an ER. So I won't be testing these foods anytime soon.

Sorry that was such a long answer to your question, I guess the answer is that yes I am much better now, but I am only 6 months into a recovery from an illness that had me so weak I was unable to work for three years and practically bedridden with pain and fatigue for several months. At one point I was not allowed to drive via doctors' orders because I was randomly passing out from pain/fatigue. Now I have my life back. I drive places--in fact my husband and I took a road trip last month in which I was able to drive three hour stretches. Prior to that I could only drive for 30 minutes at most before I became so fatigued I would have to pull over. It was really bad when I was working and my commute was 45 minutes. I had to plan two hours or more to get to work. I would drive half way and then stop and rest, then continue on. Now I have my life back to a great extent. I still have not gone back to work and I still have days I call "low-energy" days. But I am able to drive myself to the grocery store and do regular housework again. I can tell I still have a long way to go. It's not an easy way of eating to keep up, but it's well worth it. I try to walk or do some low-impact exercise every other day and I'm seeing the results by getting stronger and also losing excess weight.

It's important that you keep in mind, however that my experiences may not be what you end up experiencing going gluten free, or even if you end up gluten/soy/dairy free. I can't tell you if you need to give these things up or if it's something else causing your fatigue. But I share my story so you know that you are not alone in having unexplained fatigue. Keep searching for your answers and don't let anyone tell you that this is all in your mind.

[amaterasu2915]

My friend started taking 15-minute readings after a sugar challenge. She read labels and tried to eat about 75g of sugar with a mix of fruit juice and a sweet cereal. Normal range is less than 140, pre-diabetic is 140-200, and diabetic is strictly defined as over 200 after 2 hours. My friend's sugar jumps fast, climbing to 160-170 within an hour. She has done a lot of research and her reading suggests the neuropathy can appear with impaired glucose tolerance that may not meet the strict definition of diabetes. Her feet were so painful they kept her awake at night and she couldn't wear closed shoes. It's much better for her now that she's stabilized her blood sugar.

Open Original Shared Link

Open Original Shared Link

If all is fine with the sugar, gluten intolerance is another big cause of ideopathic neuropathy.

Good luck sorting all this out. I feel so bad for you with the fatigue because I know how awful it is.

Thanks, Skylark. I did a blood test just yesterday using an OTC blood monitor. About 2 hours after eating a big bowl of white rice, my glucose level was 149. Based on my research, some reputable organizations consider that acceptable (anything under 180 being OK), others do not (anything under 140 being OK). However, I have read that a completely healthy person typically has a level of 130 or less. So in some ways I sound like your friend.

My guess is that I do have a blood sugar problem, although it has not spiralled out of control quite yet. In my research into my sleep apnea, I also saw some research on a link between elevated glucose levels and sleep problems. I am guessing/hoping that if I can figure out my sleep problems, I can reduce my blood sugar as well. I tend to believe that my peripheral neuropathy is more due to something other than pure glucose; there was a 6-day period where I stuck to a very strict SCD diet (I also discovered that on these forums), where almost every meal consisted of peas, greens and cheddar cheese. It started out OK, but as time passed, I felt I was declining -- some bloating, more tingling, etc. After that period, I switched to rice gruel, where I seemed to do better. Now I am just methodically adding foods to my base diet of rice, to see what the effect is.

Thank you again for your suggestions and comments.

[amaterasu2915]

That's hard to answer because I didn't just go gluten free to start with. I had been reading a lot about food intolerances as well as gluten. Before that I went through so many tests in addition to the sleep studies--I had and MRI, a heart monitor, tons of bloodwork (tests for everything from Lupus to Thyroid Disease). I got frustrated with the doctors not finding anything. Finally, I decided to do an elimination diet to figure out if certain foods were bothering me. I eliminated all carbs, all sugar, all dairy, all soy, all legumes and most fruit to start. For a month I ate only grilled chicken or beef and steamed vegetables (minus potatoes and corn). I only used olive oil for cooking. I did use honey as a sweetener and kosher salt and black pepper as well as lemon to season my food, but no other seasonings. I also continued to take a multi-vitamin. I felt better after two weeks on the elimination diet. I started to have surges of energy, although I was still fatigued most of the day and I started to sleep somewhat better. Then I started to add things in one at a time to see my reaction. I had a classic stomach reaction to wheat, rye and barley products--in fact my gastro problems were worse than they had been before or at least they seemed worse. I also felt tired for days after having anything with gluten.

I also found that soy made me tired and made my joints and muscles ache. IMO, Soy messes with my thyroid. Do a google search for soy and thyroid disease and you will find all kinds of links discussing the connection. Thyroid diseases run in my family so I have had my thyroid checked every year for the past few years but the tests never came back abnormal enough to be diagnosed with anything. It's just my theory, but I think soy negatively affects my thyroid and therefore throws my whole body into a tired mess. In addition to the fatigue and muscle pain I get with soy, I also think it makes me more emotional and anxious.

I had to give up most dairy too. Dairy made me have asthma attacks, allergies and chronic sinus infections, which made it even harder to sleep. Who can sleep when you're fighting just to breath? I still have allergies to dust pretty bad, but I have hardly had any seasonal allergies and I have not had a sinus infection since around February (when I last had large quantities of dairy). I also had some bloating with dairy, but the breathing problems were the worst. I attribute this to the lactose mostly. Now it has been 6 months and I can eat yogurt, butter and low-lactose cheese without many problems, but if I eat regular ice cream, drink milk or eat too much cheese in a day I start having stomach pains and difficulty breathing.

I had to eliminate foods with yeast because I would break out in skin rash when I had yeast. I don't know if this was candida or what, but after six months yeast-free I am now starting to experiment with some gluten free yeast breads and I have not had a rash again.

The other foods in my signature (Shellfish, pork and mushrooms) are true food allergies that I have had for a long time. These are the traditional types of allergies that would make my throat close up and send me to an ER. So I won't be testing these foods anytime soon.

Sorry that was such a long answer to your question, I guess the answer is that yes I am much better now, but I am only 6 months into a recovery from an illness that had me so weak I was unable to work for three years and practically bedridden with pain and fatigue for several months. At one point I was not allowed to drive via doctors' orders because I was randomly passing out from pain/fatigue. Now I have my life back. I drive places--in fact my husband and I took a road trip last month in which I was able to drive three hour stretches. Prior to that I could only drive for 30 minutes at most before I became so fatigued I would have to pull over. It was really bad when I was working and my commute was 45 minutes. I had to plan two hours or more to get to work. I would drive half way and then stop and rest, then continue on. Now I have my life back to a great extent. I still have not gone back to work and I still have days I call "low-energy" days. But I am able to drive myself to the grocery store and do regular housework again. I can tell I still have a long way to go. It's not an easy way of eating to keep up, but it's well worth it. I try to walk or do some low-impact exercise every other day and I'm seeing the results by getting stronger and also losing excess weight.

It's important that you keep in mind, however that my experiences may not be what you end up experiencing going gluten free, or even if you end up gluten/soy/dairy free. I can't tell you if you need to give these things up or if it's something else causing your fatigue. But I share my story so you know that you are not alone in having unexplained fatigue. Keep searching for your answers and don't let anyone tell you that this is all in your mind.

No need to apologize for "such a long answer to your question!" I really welcomed it, thank you. It's always helpful to hear other peoples' stories in detail.

Right now I am also slowly moving through foods, retreating from ones where I feel like I am having a reaction. My diet is pretty much limited to olive oil, fish, rice and cooked spinach. We'll see how things go. Thank you again for sharing your thoughts!