Horrible Symptoms Return After Years Of Feeling Well

[BornTooSoon]

I originally discovered I had celiac disease after reading about it on the internet in 2006. My main symptoms were brain fog, myscle twitches, cloudy urine, and severe constipation. For 4 years I felt fantastic. It was like a miracle and I was so happy to have my life back. Fast forward to 2010.

I start noticing that I'm becoming more constipated again. Then my urine becomes cloudy again. By this, I mean that when it hits the bowl, I can see tiny particles in the urine spreading out through the bowl. When I'm healthy, the mixture looks more homogenous and I can't identify particles. Next I start getting anxiety attacks and really bad brain fog. Now I've been getting worse and worse. I have all of these symptoms and more. My fingertips constantly look shriveled and I think I'm losing some of my sense of smell. I'm thirsty all of the time. One of my eyelids is swollen or just droopy all the time. I have brain fog almost all of the time, and I have to plan my sentences out before I start talking, otherwise I have to throw in several "uh..." pauses into them. The most crippling problems are the anxiety and the brain fog.

I was a highly intelligent person. I've become an idiot. It is breaking my heart because I have to be told how to do something several times before I catch on for even simple tasks. I'm a poor shadow of what I once was. I used to be into thrill seeking (scuba, skydiving, etc) and now I feel so bad I'm scared to even go to the store by myself.

If anyone has any ideas, I'll gladly listen. I've done so much testing and I never find out anything. I had an upper endo and coloscopy. Nothing found, no sign of celiac. Just a few red patches that looked like irritation. Doc said not a big deal. I got tested for delayed food sensitivities and eliminated all of the positive ones for two months and I didn't feel any better. Tested high for pinto beans, egg, milk, soy, red #40, and white fish. Then, I thought for sure it was hypothyroid since my symptoms match up so well, but my tsh is constantly at 3.0 and my free t4 is at the upper end of the range. My free t3 is mid range or higher. No thyroid antibodies. No big problems indicated there. I've had my cortisol tested and it was fine, albeit on the lower end of normal for the noon and afternoon readings. B12 seems good (upper 600's). No big red flags on my blood tests. Vitamind D is a bit low, but too much vitamin d makes my heart feel funny. My vitamin D 1,25 (calcitriol) always seems high. It does not have a reference interval so I can't be sure, but I've read that 1,25 is high in inflammatory diseases. Ferritin is just a bit high, cholesterol a tad high. Testosterone normal. No candida antibodies. I've tested my blood sugar and it's almost always at 89. A handful of times (out of maybe 50 tests) it was in the 120's and one time at 130. Nothing too alarming. Lowest I've seen it was 70. My A1C was right in the healthy range. Ruled out parathyroid disease.

Any ideas? Thanks.

[ravenwoodglass]

Are you eating a mostly whole foods diet with as little chance of CC as possible? If not you may want to drop processed foods for a bit and see if that helps. I get the same sort of brain issues you are dealing with and for me it would be from accidental gluten injestion. Do be sure to check and make sure any meds and supplements are for sure gluten free also.

[Skylark]

I am struggling with cognitive problems myself so I understand the sheer frustration. I have mathematics training through differential equations, yet there are days when I cannot add two numbers without a calculator. My issues are starting to look perimenopausal migraine related but obviously that's not your issue.

Since you got such response to diet before I'm wondering how thoroughly you eliminated eggs, milk, soy? Did you do it as carefully as you eliminated gluten?

I'm trying RPAH Failsafe diet at the moment. Maybe food chemical intolerance is a direction you could look at. There isn't much testing for it other than diet.

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[luee]

I have the same problem. Caused by myself, having not had any issues in many years I grew lax and thought possibly I was completely healed. I first was hospitalized and diagnosed in 02 had to be treated with steroids. Anyhow after two months of fogginess and stomach pain, and diarrhea I have gone back to a strict and careful diet.

[Aly1]

Have you added any supplements that might have ingredients that contain stuff you have problems with? If not, I think I would probably do a strict elimination diet at this point...

[dilettantesteph]

I become a complete idiot when I'm glutened too. It so unfair, because that is when you need your senses the most to figure out what to do.

Did it come on gradually or suddenly? Did you change something in your diet, toiletries, or medications? Maybe one of them made a change. Could one of them contain gluten?

Or, could it be that you have become more sensitive to lower levels? That has happened to me.

You can try eliminating things to see if anything improves.

Or, you can eliminate almost everything to see if things improve and then add things back one per week to see if any of them bother you.

I have found that keeping a food/symptom journal is really helpful. It helped me to keep my diet really simple at first to give me fewer things to try to figure out.

Good luck. Keep working with your doctors in case their is some other medical reason for your problems.

[BornTooSoon]

About 9 months after I started feeling bad I went on a restricted diet where I was absolutely 100% sure everything I ate was gluten, egg, soy, bean and dairy free. I prepared only raw ingredients and I only ate things which I had overseen from purchase to stomach. This lasted about 3 months. During this time I did not experience a lessening of any of my symptoms. I am very fastidious about everything being gluten free and I rarely eat out. I personally read the ingredients on everything that is prepared for me, even if I don't do the preparing. I am almost 100% certain that my symptoms are due to something else other than gluten. I did not take any supplements that could have been glutening me, and the only other thing I put in my mouth is my toothbrush. I've been using crest for years. I even switched to colgate and aquafresh to see if that would make a difference.

This is so frustrating. My 82 year old grandfather has more independence than I do. He is well enough to take out his camper by himself and go camping for a weekend alone. I don't feel well enough to go to the store alone.

Just on the random chance this would help anyone, I always seem to feel the worst at the same time of day. Every day around 4:30 I start feeling worse. My finger tips shrivel, and I start having trouble breathing. This lasts until about 8:00 pm at which time it gets a bit better. On a scale of 1 to 10, 1 being the lowest, I would say I feel about a 5 out of 10 for all other hours of the day and a 1 out of 10 from 4:30 to 8. I have thought that the 4:30 feeling bad time could be a correlation to the food I eat at lunch, but I've varied my diet and it doesn't matter. It could be a result of just food itself, but I'm not sure what condition would cause me to react so badly to food several hours later that isn't related to allergies.

I feel bad enough that I would gladly give everything I own for one week of feeling well.

[Skylark]

Funny you should mention the timing of it. I'm feeling so yucky after breakfast I'm tending to skip it. It doesn't seem to matter what I eat. I've tried different foods, and even weirder the same foods I'll eat at breakfast don't bother me later in the day.

[ciamarie]

Do you take any supplements with lunch? Or maybe an afternoon snack / coffee break? I'd look at ingredients in supplements, even if they're gluten-free. The ingredients I'm currently avoiding in supplements are gelatin (capsule) and maltodextrin (plus soy, and gluten of course). I've had maltodextrin give me brain fog. It may depend on the source, but for now I don't have the budget to experiment, so I just avoid it. Otherwise, I'd agree with the other replies.

[ravenwoodglass]

Are you working or in school? If so what are you doing for work? Are you working with children or in the food industry? I wonder if you are getting small amounts of CC from something that you are doing during the day rather than from food.

[BornTooSoon]

I work at an office with my own desk. I have my own break room with my own refrigerator and microwave. I don't share anything with the other employees. I don't take any supplements. I've been taking a look again at reactive hypoglycemia because my symptoms seem to match pretty well. I've been taking my blood sugar 15 times a day and so far my average is 79, which is inside the normal values of 70-100 so I don't know if that helps. I have noticed that I seem to feel better when it is around 100 though. But that only happens for a short while right after eating, and only if I eat something with carbs. Then, within a few minutes of hitting that level it pluges right back down to the high 70's.

Even though it isn't really indicated by my blood sugar level, I'm going to order some blood tests for Monday. Insulin, C-peptide, am cortisol and acth. Maybe I'll get lucky and something will point to an insulinoma that produces just enough to make me feel bad or a pituitary/adrenal problem.

[Skylark]

I wonder if you'd feel better on a ketogenic diet? It's hard to stick to but a lot of people report increased mental clarity. Another option is to eat a lot of coconut oil. Apparently the medium-chain triglycerides get converted to ketone bodies and your brain can use them.

[BornTooSoon]

I tried a ketogenic diet last week, and while I did seem to feel a bit more mentally "there", I felt pretty bad otherwise. Especially my heart. It felt like it was beating really forcefully. Not necessarily fast or slow, just a very hard pounding feeling all day long. I also felt feverish and could not sleep at all. Every time I make one symptom better it just seems to make another worse. Getting the following tomorrow:

Insulin, C-Peptide, Cortisol, ACTH, Aldosterone

Just shooting in the dark, but I have to keep trying. Going to ask my GP for a head and abdominal scan next time I see him.

[Lori2]

I wonder if you'd feel better on a ketogenic diet? It's hard to stick to but a lot of people report increased mental clarity. Another option is to eat a lot of coconut oil. Apparently the medium-chain triglycerides get converted to ketone bodies and your brain can use them.

Skylark, I wonder if you could tell a little more about how you use coconut oil. Do you just use it in cooking or do you use the MCT oils alone?

[pricklypear1971]

I work at an office with my own desk. I have my own break room with my own refrigerator and microwave. I don't share anything with the other employees. I don't take any supplements. I've been taking a look again at reactive hypoglycemia because my symptoms seem to match pretty well. I've been taking my blood sugar 15 times a day and so far my average is 79, which is inside the normal values of 70-100 so I don't know if that helps. I have noticed that I seem to feel better when it is around 100 though. But that only happens for a short while right after eating, and only if I eat something with carbs. Then, within a few minutes of hitting that level it pluges right back down to the high 70's.

Even though it isn't really indicated by my blood sugar level, I'm going to order some blood tests for Monday. Insulin, C-peptide, am cortisol and acth. Maybe I'll get lucky and something will point to an insulinoma that produces just enough to make me feel bad or a pituitary/adrenal problem.

I have what acts like hypoglycemia but my blood sugar never goes below the 70's. My Naturapath is testing me for hormonal issues/cortisol now - although we both know I have the issues she's hoping to narrow it down.

My episodes so far have been triggered by sugar binges - I get too much sugar then I go hypo for weeks trying to level it out. I found a tiny but if sugar mediated with fat is the trick. Like 32 semi sweet chocolate chips, or half a low gci nut bar coated in sweetener. I have seriously eaten ALL DAY and not shook the hypo, and had blood sugar lower after eating than before eating - nothing fixed it until I ate a bit of sugar. Weird but true.

Now I eat very few sweets, mediated by fiber and healthy fats. I am trying to avoid the binge and the resulting hypo.

[Skylark]

Skylark, I wonder if you could tell a little more about how you use coconut oil. Do you just use it in cooking or do you use the MCT oils alone?

I use it in low-carb breads and baked goods mostly. Spectrum Naturals also makes a refined coconut oil that's suitable for sauteeing that I was using when I wasn't sure about whether I could tolerate ghee. I also use canned cream of coconut in my coffee because I like better than any of the nut or soy milks. I haven't tried any of the MCT products.

[Bubba's Mom]

I add coconut oil to my morning coffee..and use it like butter on cooked veggies. I add it to my serving of soups or stews, and use it to brown meats, or fry potatoes etc. I use it to make Krispy Treats. It can be used in baking recipes. I try to get at least 3T. a day. A bit more is even better.

I have a friend that just eats a spoonful a couple of times a day. Gagged me to do it.

I've found it really helps to feed my brain, just like glucose does. It's healing to the intestine. It has a lot of uses for the hair/skin too.

I prefer Nutivia organic extra virgin. I get it online at A mazon. They have a pretty good price. It's worth getting a good quality oil. The LuAnn brand that most grocery stores carry isn't nearly as good quality.

[Lori2]

This may be off topic, however: My husband has Alzheimer's, getting into the latter stages. I have had him on a coconut oil/MCT oil mixture, three tablespoons a day, for three years. Obviously, I think it has helped or I would not have continued it for so long.

[SallyC]

I suggest you do some research on adrenal fatigue and also digestive enzymes. You might not be digesting proteins. Also, research Biomeridian testing. It pinpointed my vitamin deficiencies and turned my life around.