I Feel Like A Hypochondriac

[Coolclimates]

Just more of a rant than anything, but I'm tired of not feeling well and I've been on the gluten-free diet for 4 months and I'm still just as tired as I always (my major symptom). I just saw my general doctor yesterday and told him that I still wasn't feeling well and he said maybe some of my symptoms were "psychological" and that he couldn't do anything else for me...he was frustrated, and so was I. He said it might be depression that is making me tired. Well, I wouldn't be surprised. I have practically lost my job, am unsure about my future and was also a victim in a recent car accident (and my car was totaled and I have to buy a new one) and have been suffering from post traumatic stress disorder (I was in a horrible train accident 9 years ago) and nightmares, anxiety and poor sleep. I am having to take a nap nearly daily to feel like I can get through the day.

I also saw my sleep doctor in Indy recently (the one who originally got me tested for Celiac) and she said she thinks that I'm doing much better (I've gained some weight, but other than that, no improvement). Easy for her to say! I just feel like no one is taking me seriously in the medical field right now.

Now my mom is getting extremely stressed out and she is normally an optimist. I ask her what's wrong and she said that she's extremely worried about me right now, my job situation, my health, etc. And I can see that my dad is very stressed out, too. I feel like I have caused my parents all this stress and that makes me feel even worse.

I just want to talk with others who can sympathize and not think that this is "all in my head."

[VioletBlue]

No, it's not all in your head. It never is, but that's the best answer doctors can come up with. They get frustrated and intimidated when they can't "cure" someone with a pill or an operation and they tend to write you off as a head case. They know they can't cure psychological issues so that "diagnosis" lets them off the hook in their minds.

I think you know it's not all in your head. Just as I knew years ago that it wasn't all in my head no matter how many doctors tried to tell me it was. You know your body better than anyone else ever could; you live in it!

It does take some time to feel better. Some people take longer than others. Four months may not be enough time for you, particularly if celiac disease caused anemia or other vitamin deficiencies.

One of the symptoms for me of food allergies is exhaustion. I've weeded out other food allergies that way in addition to gluten intolerance. Could you have other allergies you're not aware of?

You have been through a lot, but one thing I've learned over the last couple years is that everything life throws at me is much much easier to deal with if I'm physically well. One little bit of gluten or soy or citrus and suddenly everything in my life gets blown out of proportion. There's a huge difference for me between how I feel when bad things happen and I'm physically well, and how I feel when bad things happen and I've just been CC'd by gluten.

And I know many others here have heard the "It

[Skylark]

Ugh. That doesn't sound like any fun. I hope you're getting some psychological help for the PTSD. Not sleeping will make anyone tired and sick-feeling.

It took me a long time gluten-free and I had to take a lot of vitamins to get rid of my psych symptoms.

[ravenwoodglass]

I have PTSD. I hope your not doing what I did for so many years, ignoring it and hoping it will go away by itself. That doesn't work. If your having nightmares that is disrupting your sleep and that alone will make you not only exhausted but the type of nightmares that come with PTSD and what I call the daymares can raise your fight or flight reactions to a level where they can severely impact your health.

If you are not seeing a good psychiatrist you should be along with perhaps a counselor. I see both. The psychiatrist takes care of my medication, I take alprazolam as needed and the counselor helps me to learn coping mechanisms.

If you have PTSD you need to find the strength to fight it. It's not easy but the fight is well worth it. As my son so aptly put it to me it is not a weakness to seek help with PTSD.

[bluebonnet]

i was told by my doctor that "perhaps i had a little IBS and a case of hypochondria". that was several years ago ... and i never went back to him. it took me over 13 years to get diagnosed properly. and that was the beginning of this year with enterolab testing and then confirmed with endo in may. for many it takes so much time to get diagnosed you can't help but feel like a hypochondriac. don't give up. find someone to talk to about your ptsd and hang in there doing all you can to stay gluten free. in time, you will heal. best wises.

[T.H.]

So sorry you have to put up with crap like that. :-(

I'd ask this: have they tested you for H. pylori, food allergies, food sensitivities? Are you still on dairy? Any of these can slow down healing, too.

Have you been tested for Crohn's? Or to see if your intestines are healing or if they are still not healing yet?

If not, or if they haven't been testing you for anything else it could be, but you're getting told it could be psychological, then that's a good clue that you need a new doctor if you can get one. :-( They accuse patients of this WAY too much, and more and more of us are having issues like this, where the answer isn't one simple problem, but many.

I was worse after going gluten free, exhausted, nauseous and dizzy, all sorts of fun stuff. I turned out to have allergies to many foods. My reactions were too mild to give me hives, but they were enough to affect me. Keeping a food journal helped me find a couple more foods that make me sick, but I'm fine if I stay away from them. They're not even allergies; they just mess me up. Really weird.

I was lucky enough that my doctor believed me and actually helped me find out what was wrong. I hope that you can find the same!

[butterfl8]

((((Hugs))))

Not much else to say, just that.

-Daisy

[Charlie's Girl]

sending good nrg your way.

i recognize your exhaustion, frustration, and plight.

hope you are feeling better tonight and get the support team/doctors you need. i know the good forum members will be happy to help you figure this out.

your parents love you and they'll be ok when you're ok. it's in their job description to worry.

rumor has it- seriously, ask the long time members- that this does get better and easier.

kind regards.

[Coolclimates]

Thanks for the support, everyone. It means a lot to me. Some days I just get kind of discouraged, but we all know those days.

Yes, I have gotten extensively tested for about every food allergy that exists, plus stuff like pollen, mold, etc. They all came back negative. So I can rule out any allergies. However, I do wonder if I have other food intolerances (as opposed to allergies) like to dairy, etc. I've been trying very hard to cut out all dairy but I guess I still haven't done the best because I've been eating lots of goat and sheep cheese, thinking that if they aren't from cows, than it's ok. But according to godairyfree.com, goat and sheep products are STILL considered dairy. Bummer. Anyway, if I don't feel any better with the elimination of dairy in a few weeks, I'll probably just forget it. No use torturing myself if that's not the problem. I just hope that I don't have other food intolerances like to corn, soy, etc. I also can't tell if a lot of this fatigue is due to all the stress I've been through lately (and also a symptom of depression) or if it's Celiac. Really frustrating.

Yeah, it seemed like my doctors were willing to help me out to a certain point but once I was diagnosed with Celiac and I haven't been feeling better, they then want to duck out. Like they just give up too soon. It's frustrating. I'm sure you all can relate.

[kareng]

Sorry you are feeling down. As a mom, I can tell you that it is our right and our privilege to worry about our kids. We feel better if you tell us something we can do. If there is something they can do to be helpful, ask.

Is there something you used to do with your parents as a kid that you really liked? Fish with Dad? Go to the zoo with both? Bowling? Watch I Love Lucy? Bake cookies? You could ask them to do that now ( just gluten-free cookies). It will be fun for you and fun for parents.

I know some people think these things I suggest are silly. I know they do not fix the whole problem. I want to help to fix the attitude or happiness level. When you feel a little better mentally, you can handle other things better.

[Skylark]

Like you, I suspect some other intolerances but I can't seem to pin the reactions to a particular food. I'm tired all the time and feel like I just haven't recovered from my recent thyroid trouble even though my bloodwork is fine on the new supplement. I'm getting frustrated enough to try the FAILSAFE food chemical intolerance diet. I think I'm going to start tomorrow, but I have to finish weaning myself off my beloved coffee. My last crash-and-burn was after gluten-free dark beer which must have a ton of interesting natural food chemicals in it and the intolerance doesn't seem to be yeast.

Info is here.

Open Original Shared Link

Click the "symptoms" link on the left to see all the stuff they say food chemical intolerances can cause.

[GFinDC]

Hey, it is very easy/normal to be depressed when you are sick for a long time, if it is from celiac disease or any other disease. And not sleeping enough can wear ya down too.I am just getting past 2 and 1/2 months of sleeping 3.5 to 4 hours a night, or not sleeping at all sometimes. And it does take a toll on your attitude reserves. Or mine anyway. And then I went and glutened myself a couple days ago an d am not sure how yet. So back to bad sleeping again. And I am sure I could do my job better (I think) if I was able to sleep like a regular person. Maybe.

I did much better in some ways right after I went gluten-free. The slowly got worse and worse and miserable and all Woody Allen-ish again. Oy-vey! Eventually I figured out a bunch of my other food intolerances and got them bad foods out of my diet, one or 2 at a time. When I got rid of soy I got a lot better although it took a few weeks to be sure it was really happening. You might be similar, and find one critical food that makes a big difference in your health.

I considered quitting my job since I felt so incompetent not being able to remember things, or concentrate on a task for more than a few seconds. And being grouchy and irritable to boot. But those durn food intolerances can do some awful things to us if we let 'em. Maybe you are one of the few celiacs that doesn't have any other food intolerances but I don't see many people posting that they have only gluten as a problem food.

I gave up dairy 14 years ago when it suddenly started causing me problems. Eventually I learned about celiac disease and gave up gluten also. I definitely missed it at first yet it just isn't so important an issue after a few years. I have tried it a few times recently and do much better with it now. But I still don't eat it because the symptoms build up and get worse. It just isn't worth being sick for it.

Then out went the coffee and tea, and the nightshades, and the garbanzo beans, and the carrots and turnips, What the hey, it is better to feel good and have some energy than to eat some stupid food that you enjoy for a few seconds. It's a minor thing to give up a food in exchange for what it returns in health. You can't even buy medical drugs that will heal your body like getting off your food intolerances does. Abstinance is cheap medicine.

Anyway, this was the general rant up a storm thread right? :-)

Everything is better without xxx and xxx and xxx etc... Find your x's and ditch 'em!

[GFinDC]

Hi Coolclimates,

You might like this thread. It has recipes for making dairy-free cheeses and milks and gravies. I haven't tried these myself, but several people posted that they really like the recipes. It's long thread but has lots of recipes too.

Dairy Free And Egg Free And Soy Free (except For A Couple) Cheese,

[gfquestion]

I can definitely sympathize! I have been going to the Drs for 3 years. After the first year they just gave up saying they don't know what's wrong with me. Then I learned about the gluten thing, tried that and started feeling a little better. I told them about it but when the blood test came back negative, and I was crying in the office when talking about my symptoms, they just wrote it off as psychological and depression. I HATE THAT!!! The thing that troubles me is my health! Not the other way around. I think they are just incompetent and are not very knowledgable about celiac. I am sorry and I hope things look up. Maybe you can get a referral for a celiac specialist who really understands and knows what they are talking about.

[Coolclimates]

Actually, I'll be seeing a Celiac specialist doctor at the Celiac Center of Chicago in November, so hopefully I can get some of my questions answered or get some relief. I've called the center a few times. The first person I spoke to was really helpful. However, the 2nd time I called, the girl didn't seem to have any answers or knowledge at all. I asked her 2 questions:

1. should I not work in a bakery in danger of inhaling flour and other gluten?

she said she didn't know, but didn't think it was the best idea.

2. when going on the dairy free diet, did sheep and goat cheese count as dairy?

she said she wasn't familiar with this diet and had no idea.

Now, I pretty much have gathered (from previous posts I've written about baking with regular flour) that it can be really harmful if inhaled. But I'm still not sure about the 2nd question, regarding dairy.

I've been trying very hard to go dairy free for the last 2 1/2 weeks, but have been eating goat and sheep products. Maybe I have to cut those out as well? I've never had any stomach problems that some Celiacs have (except for acid reflux), so I'm not sure if it's really necessary for me to cut out dairy or any other major allergen. I also have had allergy tests and all came back negative, including wheat. But what I'm really wondering about is food intolerances, not allergies.

[kareng]

2. when going on the dairy free diet, did sheep and goat cheese count as dairy?

she said she wasn't familiar with this diet and had no idea.

Now, I pretty much have gathered (from previous posts I've written about baking with regular flour) that it can be really harmful if inhaled. But I'm still not sure about the 2nd question, regarding dairy.

I've been trying very hard to go dairy free for the last 2 1/2 weeks, but have been eating goat and sheep products. Maybe I have to cut those out as well? I've never had any stomach problems that some Celiacs have (except for acid reflux), so I'm not sure if it's really necessary for me to cut out dairy or any other major allergen. I also have had allergy tests and all came back negative, including wheat. But what I'm really wondering about is food intolerances, not allergies.

I not sure why you're going dairy free if it doesn't bother you? Life's hard enough. Some people on here do OK with dairy that is not cow. But its still dairy, just slightly different. Also, it may be processed differently so the amount of lactose is different.

I have had good luck emailing the Celiac center with a question.

[aderifield]

I can't help you with cheese and other dairy products, but definitely try almond milk. I have found it to be really refreshing. In fact, I wouldn't go back to cow's milk for anything.

Go over your diet with a fine tooth comb and double check to make sure there aren't any gluten culprits among your foods.

I couldn't figure out why I was getting worse instead of better in recent weeks. Today, after skipping my yogurt for 3-4 days, I had one and immediately started to itch, my stomach, to rumble. I Googled it and found I had mistakenly purchased the wrong brand. I have researched so many products in recent weeks and that one, my memory failed me on - easy mistake to make when you're changing your whole life and food base.

Also, and I realize this has been a big topic around here, but Gatorade makes me itch horribly for some unknown reason that I'm not even going to try to figure out. I'll just accept it and move on.

If you have flashbacks... immediately acknowledge that you are having one, tell yourself that you recognize it as an important memory, but also, as one you will have to think about later bc you must remain focused upon the moment at that moment. This worked for me when nothing else did. I think bc with that simple statement made only to myself, I reasserted control over where I would allow my thoughts to go. My mind soon settled down and quit tricking me into thinking the past was my present and that the feelings I experienced during my trauma maintained even the slightest dominance over me.

Okay, good luck to you.

[Skylark]

Also, and I realize this has been a big topic around here, but Gatorade makes me itch horribly for some unknown reason that I'm not even going to try to figure out. I'll just accept it and move on.

You might keep an eye on food colorings, especially tartrazine.

[Coolclimates]

I don't seem to get any side affects when glutened, or none that I've noticed so far. So I may be continuing to consume gluten and not know it. I'm being extremely careful in everything I eat, drink, etc. I'm also making sure my medications are gluten free as well as my toothpaste, lipstick, shampoo, etc. I just don't know. I think some of this fatigue is also due to depression, as I'm having a rough spell right now.

I'm trying to eliminate dairy for a month because I've been told that often for the intestines to heal, dairy must be taken out for awhile. It can be mistaken as gluten by the intestines and therefore produce the same symptoms. But I've got about a week and a half left to go with that and if I'm not feeling better, i'm not gonna continue to torture myself with this diet. I think I'm having problems with nutrient deficiencies right now, which could be another culprit. I need to eat more eggs and meat, and I don't eat nearly enough.

[Marilyn R]

I just replied to this, but it isn't appearing on the thread so I'll start over.

Depression, insomnia, malaise and fatigue is what started me on my medical odyssey initially. The physical symptoms started much later.

Most mainstream doctors recommend avoiding soy with thyroid disease. Even though soy is difficult to eliminate from your diet, it may be worth a shot for a couple of weeks to see if you feel better. (And soy or soy derivatives are in a lot of the alternative milks like almond milk, btw.)

I wish you the best. There is a chart for pediatricians showing the signs of symptoms of food allergies. "A feeling of doom" is a category 4 (the worst, like a hurricane) symptom. If I can find the link, I'll post it.

Good luck, hope you start feeling better soon.

[Skylark]

Most mainstream doctors recommend avoiding soy with thyroid disease. Even though soy is difficult to eliminate from your diet, it may be worth a shot for a couple of weeks to see if you feel better. (And soy or soy derivatives are in a lot of the alternative milks like almond milk, btw.)

They do? I've been on thyroid for 20 years and never heard that.

[GFinDC]

I don't know if doctors recommend avoiding soy, I wish they would. But it is a goitrogen and a well known one at that. So it isn't good for people's thyroid function. Of course it also has estrogen like chemicals in it which can wreak havoc with people bodies in other ways. And it is shown to impair the ability of intestinal cells to fully mature in rats. Plus when I put toasted soy nuts out for the birds and squirrels to eat they ignore it completely. But they eat all the other stuff I put out for them. That's enough to convince me it is poison.

[Coolclimates]

Well, just to update you on this thread. Turns out I'm NOT a hyperchondriac as I just got retested for my IgA and it still came out very high, despite the 6 months of the gluten free diet. Also, I tested positive for the Celiac gene HLL DQ2. I also found out that I'm low in my Vitamin A and Zinc. I just got all this information today from the Chicago Celiac Center, where I had an appointment last week. So that's why I haven't been feeling better...the nurse said that my intestines are still inflamed. The question now is WHAT is causing my intestines the inflamation if I'm following a strict gluten free diet. I was told that the standard allergy tests that doctors use are pretty useless, as they only will test positive for instant allergic reactions, not delayed allergic reactions. It turns out that 90% of people with food allergies have delayed reactions, so most of the time these tests are ineffective. So I got the more sensitive allergy tests, but don't have the results yet. I'm hoping to get them soon so I can get to the bottom of all of this.

I also saw a holistic doctor in Illinois recently where I had all these tests done. However, they will not share any test results over the phone and will only tell me if I make another appointment to see that doctor, who is nearly 1 hour away from where I live. The folks at the Chicago Celiac Clinic found that to be odd and annoying that they won't tell me and have gotten the results of those tests through doctor's orders. So the next thing I've done is to make a follow up appointment at the Chicago Celiac Center in January. I live in Champaign, which is 120 miles south of Chicago but fortunately will be in Chicago over the holiday break so I can go to this appointment. Additionally, I have a bone density appointment on the 28th of December. My local doctor here refuses to get me tested for bone density (he says I'm too young) so I have to get it done in Chicago instead. My local doctor is very uneducatd about Celiac disease. Again the people at the Chicago Celiac Center were annoyed that he won't allow me to get my bone density tested in Champaign. But I'm sure they have to deal with ignorant doctors all the time.

Anyway, that's my update so far.

[kareng]

I used the FAQ sheet from U of Chicago to help explain to my doc why I needed a bone density. If they asked your doc to do it, would they? My kids doc didn't understand their blood test results and said to check with U of C. He would order anything they wanted.

[T.H.]

Well holy crud, I might be able to help you!

I've been gluten-free for a year now. My re-check blood test still showed high levels, although I was very gluten free. I was having lots of trouble with reactions, though, so he thought it was likely I was reacting to foods I was intolerant to, and that it was keeping me from healing. He said that's happened to more than one of his patients.

But that wasn't it. I have since found out that I am VERY sensitive to gluten, more so than average, so the normal gluten free diet? It does absolutely nothing for me - still makes me quite sick. <20ppm of gluten is just too much for me. So is <10ppm. However, even if you are not super sensitive to gluten, if you are eating quite a lot of gluten-free processed foods, like crackers and cereal and such, you can still get too much gluten per day, enough to make you ill. Since all this gluten free food isn't actually gluten free, it's just 'really, really low gluten,' ya know?

I was lucky enough to get some suggestions from others who are really sensitive too, on what to try, and it has helped me SO much. Some of the family were skeptical at first that it was even possible, but they've seen the positive results, so it's made believers out of them!

If you have the energy, something you could try, just to see if you might be super sensitive - or just want to see if cutting gluten as low as possible might help?

For a week, maybe two at the most, cut your diet down to plain fruits, veggies, and meats. Only nuts still in the shell, if you eat them (most processed nuts and beans have low levels of CC from gluten, unfortunately).

Fruits and veggies - wash (with a gluten-free soap like 7th generation) and peel those suckers. Mulches, sprays, etc... can have gluten and CC the outside of your produce.

Meats - only get big chunks, not sliced at the deli or butcher's. If you can, get it where it's sealed at the slaughter-house. Avoid poultry for a bit - they are much more CC'd by gluten because of their processing practices.

For this period, ditch the grains, ditch the beans, ditch the spices, ditch the oils. Ditch anything processed. Even be careful of salt. If you don't want to eliminate it for a week, maybe have it only every other day, get just plain Sea salt, possibly, from a company that doesn't process spices in the same factory as the salt. (RealSalt is one I really like, and they have great customer service for people asking about allergens and such)

I know this is a very severe diet, but it can at least give you an idea if gluten seems to be the issue with your health, which it sounds like it might be, if you still have bad blood tests. If you feel better on it, then you can start adding stuff back in (I ended up making a lot of calls to gluten-free food companies, to determine which ones had the lowest gluten standards.) If you don't feel any better, it's probably a good indication that something else is affecting you, yeah? So a quick, down-and-dirty test to help you figure out which direction to look at for a solution to your health.

Also, if it helps? My daughter was similar to you - fatigue and depression as symptoms, but no gut issues, nothing that happened right after she ate gluten. When we got the gluten down to a certain level, however, and kept it there for a while, she started developing symptoms after she was glutened. She's not happy about the reactions, I can tell you that, but it's been SO helpful in keeping her safe and helping us figure out what is safe for her to eat. Hopefully, the same might apply for you, too!

Well, just to update you on this thread. Turns out I'm NOT a hyperchondriac as I just got retested for my IgA and it still came out very high, despite the 6 months of the gluten free diet. Also, I tested positive for the Celiac gene HLL DQ2. I also found out that I'm low in my Vitamin A and Zinc. I just got all this information today from the Chicago Celiac Center, where I had an appointment last week. So that's why I haven't been feeling better...the nurse said that my intestines are still inflamed. The question now is WHAT is causing my intestines the inflamation if I'm following a strict gluten free diet. I was told that the standard allergy tests that doctors use are pretty useless, as they only will test positive for instant allergic reactions, not delayed allergic reactions. It turns out that 90% of people with food allergies have delayed reactions, so most of the time these tests are ineffective. So I got the more sensitive allergy tests, but don't have the results yet. I'm hoping to get them soon so I can get to the bottom of all of this.

I also saw a holistic doctor in Illinois recently where I had all these tests done. However, they will not share any test results over the phone and will only tell me if I make another appointment to see that doctor, who is nearly 1 hour away from where I live. The folks at the Chicago Celiac Clinic found that to be odd and annoying that they won't tell me and have gotten the results of those tests through doctor's orders. So the next thing I've done is to make a follow up appointment at the Chicago Celiac Center in January. I live in Champaign, which is 120 miles south of Chicago but fortunately will be in Chicago over the holiday break so I can go to this appointment. Additionally, I have a bone density appointment on the 28th of December. My local doctor here refuses to get me tested for bone density (he says I'm too young) so I have to get it done in Chicago instead. My local doctor is very uneducatd about Celiac disease. Again the people at the Chicago Celiac Center were annoyed that he won't allow me to get my bone density tested in Champaign. But I'm sure they have to deal with ignorant doctors all the time.

Anyway, that's my update so far.