Should I Even Be Here?

[raesue]

I made the decision to be tested for celiac after almost losing my job from oversleeping too often, in spite of having tried a plethora of antidepressants to alleviate the problem. Basically, I'm lucky that I've been there so long and my boss likes me. Unfortunately, when I looked into it, I discovered there's no way I can afford even the blood test. My insurance is terrible! I decided to try a gluten elimination test.

My boyfriend basically thinks I'm a hypochondriac. He says all my problems stem from eating too many processed foods, and that I should "go on a whole foods diet rather than diagnosing [myself] with some disease." This is why I thought I should look for some outside advice from those afflicted.

Family History:

My grandfather was diagnosed a couple of years ago before a heart bypass. He has since gone back to gluten, having decided the doctor was wrong and his symptoms were all related to his heart problems. However, my cousin recently went gluten free and says she never felt better.

My sister has type I diabetes, as does her daughter, and thyroid problems. My brother is autistic, and has severe reflux. The three of us and our father all take antidepressants.

Symptoms:

Gastrointestinal (warning, gross)

The first display of a possible symptom comes from my mother's recollection of constipation at the age of three. However, this was during a family move, so I have always attributed my stomach problems to anxiety. I have a stomachache, and frequently diarrhea after eating. I get constipated, with horrible cramping for awhile which abruptly becomes a desperate need to rush for the toilet. Then I hurt with frequent trips to the bathroom for a couple hours until I finally curl up in a ball and fall asleep. I also have stearorrhea, which I had never even heard of until researching celiac. I would see oil floating and think it really strange, but it wasn't really something I was prone to discuss. There is also frequent gas, bloating, and nausea.

Vitamin/mineral deficiencies:

I began having problems with weak enamel as a young teen. I even had a prescription toothpaste which never really seemed to help all the white spots, which are now brown and make me very self conscious. Pregnancy and nursing made it so bad that they began breaking very frequently so I am missing several molars. I attributed this to grinding my teeth in my sleep.

I was told once about ten years ago that I had a potassium deficiency. I hated this doctor after that day because I saw him write "anorexia?" On my chart. This is something I was very sensitive about because I had gotten this accusation a lot in high school from the mean kids. I actually think that that contributed to my poor eating habits because I guess I thought if I walked around with junk food all the time it would either prove them wrong or allow me to gain some weight. It did neither.

The blood work during my pregnancy showed me to be anemic, but I've not had it checked since so it may have just been gestational.

Psychological:

I was diagnosed at twenty with a type of depression called dysthymic disorder. It shares many symptoms with celiac disease: insomnia, hypersomnia, fatigue, appetite increase. Two years later I started paxil, and it worked amazingly well... for awhile. When it stopped working I was dumb enough to abruptly stop taking it and basically spent two weeks in bed before going to a doctor and literally begged for help. She referred me to a psychiatrist who doubled the paxil and added wellbutrin. I never had the chance to see if this helped because I found out I was pregnant and wasn't comfortable with the idea they might harm my daughter.

I haven't seen a psychiatrist since because my insurance doesn't cover "mental or nervous disorders", but I have found a general practitioner who gives me a discounted rate for the visits they won't cover. With him I have tried most of the generic medications I hadn't previously tried and even one new one that he said he could supply me with samples for if it helped. These all provided minimal benefit. I even tried paxil again, but it is no longer the miracle drug it once was. I'm now back to the paxil-wellbutrin combo with little effect. Of course depression is, like celiac, somewhat of a genetic problem which I have a history of.

I started having panic attacks about three years ago. They gradually increased in frequency until I finally began keeping xanax on hand at all times.

Difficulty gaining weight:

I am a very small person. Four foot eleven and 104 pounds. This is probably just genetic, though. My mother is 5'1" I'm not sure of my father's height, but he is considered short for a male. My sister and most of my maternal cousins are also really skinny. My brother is overweight, but this is a side effect of lithium.

Fatigue:

I have a serious problem with fatigue. I am essentially useless. I oversleep for work, then take a nap as soon as I get home. I frequently don't even wake-up. When I do insomnia kicks in. I either have to plan ahead and take some ambien or I try to sleep until it gets too late to safely take it. I don't feel comfortable taking it until my daughter is asleep if her daddy isn't home which is often since he works evenings, so her stubbornness keeps me from being able to take it quite a bit. If I do manage to take it, it works wonderfully and I usually get up fine in the morning.

I basically waste my days off out of laziness because I just don't have the energy to do anything. My house is always a wreck. I procrastinate everything. This is also a major contributor to my poor diet. I'm too lazy to cook. I dont want to wash dishes. I eat a ton of things that can be microwaved in their containers and fast food. Fatigue is, of course, also a symptom of depression.

Feeling hungry all the time, numbness in fingertips, menstrual, weight gain:

I have always had a huge appetite. When I was a child, my mom would cook me breakfast and I devoted thirty minutes to eating before getting ready for school. The rest of the time I don't eat large amounts, just frequently.

I have on occasion had numbness in my fingertips. This may be completely unrelated because I do have tendonitis in both hands, but it doesn't coincide with the pain.

I've been having light or missed periods which I didn't pay much attention because the ob/gyn told me my birth control could cause that. I only think this may be related because I got the heaviest I've had in a long time within days of going gluten free.

I have been gaining weight for the first time in my life, excluding pregnancy, but I lost 39 out of 40 pounds. In the past two years, I have gone from 86 lbs to 104. I'm 28, though, so it may just be that metabolism slows as you approach 30.

Gluten free - beginning week two:

I was off a couple days on the beginning (i didn't know taco bell beef was bad). My second day without gluten I only had one episode of stomach problems, followed by a few great days, which I was surprised by because I had expected it to take longer. I then had two bad days. Both of these did occur after eating cheese. I had eaten cheese before with no problem, though. I decided I should go ahead and cut out lactose anyway. Today I am gluten and lactose free. I've had a bit of diarrhea, but no pain.

I am craving everything I can't have, especially at work (im a diner waitress) and the grocery store. At work I want grilled cheese sandwiches, chili, biscuits & gravy or gravy on hashbrowns, waffles, or toast with jelly. I also really want some donuts.

My boyfriend believes my improvement is placebo from being convinced I'm celiac or from an improved diet. I don't believe the improved diet thing is valid because I spent the first eating processed gluten free substitutes before deciding they were too expensive. I do wonder about the placebo effect because the improvement started so fast.

I don't have a lot of energy, but my days do seem to have more waking hours.

The bottom line:

What do you guys think? Likely celiac or just depressed?

[Poppi]

I think celiac is a definite possibility. Your boyfriend is right on one count though, a whole foods diet is a great way to start. In your case just leave the gluten and dairy out of the equation. A month on meat, fruits, veggies, rice and quinoa is a great beginning. Then you can try a bit of gluten or dairy and see how you feel. If you feel like crap you have your answer.

Good luck!

And depression is often caused by celiac so you may find your depression improving as well.

[raesue]

I think celiac is a definite possibility. Your boyfriend is right on one count though, a whole foods diet is a great way to start. In your case just leave the gluten and dairy out of the equation. A month on meat, fruits, veggies, rice and quinoa is a great beginning. Then you can try a bit of gluten or dairy and see how you feel. If you feel like crap you have your answer.

Good luck!

And depression is often caused by celiac so you may find your depression improving as well.

I have since decided it's also the only affordable way to go. I've gotten some bulk quinoa from the local coop, along with gluten free oats. At a regular grocery store last night my frustration didn't lift until I got to the produce section. Luckily, I love vanilla soy milk while hating the regular stuff anyway. I still have to admit to my caramel quakes and gluten free chips. At work, 30 cents/hour is automatically deducted from our checks as a meal credit. No option. So I feel silly not eating there, so that consists of meat, eggs, and hashbrowns. Grits if I could convince myself to like them. I did buy some brown rice bread to keep at work. My boyfriend made dinner last night. I obviously skipped the chicken wings, but was depressed when he realized he accidentally put soy sauce in the veggies. I never would have known I couldn't have it if he hadn't told me, so I guess I've found my next coop purchase.

I had actually been thinking that the first thing I need to do if I decide losing the gluten is to talk to my doctor about weaning off the drugs. I'm super excited of the possibility of getting by without them.

[Poppi]

Be careful of the diner food. I didn't think I was sensitive enough to get sick from contaminated pans but within a month I realized I was and have had to replace all my pans with stainless steel. So be cautious about food being cooked/grilled on a shared cooking surface.

[GlutenFreeManna]

I have since decided it's also the only affordable way to go. I've gotten some bulk quinoa from the local coop, along with gluten free oats. At a regular grocery store last night my frustration didn't lift until I got to the produce section. Luckily, I love vanilla soy milk while hating the regular stuff anyway. I still have to admit to my caramel quakes and gluten free chips. At work, 30 cents/hour is automatically deducted from our checks as a meal credit. No option. So I feel silly not eating there, so that consists of meat, eggs, and hashbrowns. Grits if I could convince myself to like them. I did buy some brown rice bread to keep at work. My boyfriend made dinner last night. I obviously skipped the chicken wings, but was depressed when he realized he accidentally put soy sauce in the veggies. I never would have known I couldn't have it if he hadn't told me, so I guess I've found my next coop purchase.

I had actually been thinking that the first thing I need to do if I decide losing the gluten is to talk to my doctor about weaning off the drugs. I'm super excited of the possibility of getting by without them.

Welcome! It does sound like you could have a gluten problem. It's too bad you cna't get a test done before you try the diet because a positive test might help convince your family to get tested as well. However if it works for you there is nothing that says you need a drs permisisiont o eat gluten-free. So go ahead and try it. The diet does have a bit of a learning curve and the PP is right in that you should do as much whole food options as possible and fewer processed options when starting out. I just wanted to mention a couple things based on your post here about what you have bought to eat so far. First, you would do better if you skipped the gluten-free oats for the first few months. Some gluten intolerant people also cannot do oats (they react in the same way as to gluten even if the oats are certified gluten-free) so they usually reccommend you wait to try them until you have been feeling good on the diet for a while. That way you can tell if you have a problem when you do try them. Also they may have changed the ingredients, but the last time I checked Quakes were NOT gluten free. Better double check that. I did a quick search but all I could find was a post form 2010 stated they were not safe. Ingredients do change, however. Their big rice cakes are labeled gluten-free, but the mini ones are questionable. Finally you can get gluten-free soy sauce. Look for wheat free tamari.

[raesue]

Welcome! It does sound like you could have a gluten problem. It's too bad you cna't get a test done before you try the diet because a positive test might help convince your family to get tested as well. However if it works for you there is nothing that says you need a drs permisisiont o eat gluten-free. So go ahead and try it. Also they may have changed the ingredients, but the last time I checked Quakes were NOT gluten free. Better double check that. I did a quick search but all I could find was a post form 2010 stated they were not safe. Ingredients do change, however. Their big rice cakes are labeled gluten-free, but the mini ones are questionable.

I called the hospital and they told me the test would run between $500 and $1700. My insurance pays 70% up to $500. I'm also not entirely sure what I have to do to get them to do that.

I'm more worried about just getting people to take me seriously. The person who has encouraged me the most is my mother. Now that I'm doing it, she's even talking about putting herself, my father, and my brother on a gluten free diet. It's my paternal grandfather, so she's the only one without the genetic tendency. I haven't talked to my sister about it yet, but Im pretty sure shed be willing to be tested.

The quakes appear gluten free to me. What do you know about "natural & artificial flavors" and "caramel color"? I wasn't quite sure about that part. It does list milk, but I understood from what I read that the quantity mattered on that.

I knew I couldn't use the toasters at work, but I never thought about the grill. I'm definitely new to this. I never thought it would be this hard.

[Korwyn]

Hi raesue,

I just wanted to address the 'placebo' effect. For some people, removing the gluten from the diet can indeed produce a dramatic, almost immediate response. It did with me. Within two days I felt like I was high. I felt physically better than I had in years. And I don't think it was a placebo effect for a couple reasons: 1) Immediate (2nd day) change in my physical symptoms - specifically absence of daily (for years) diarrhea; 2) The effect continued! Plus the symptoms returned with a vengeance upon accidental (unknowning) ingestion of gluten.

Also, I was a skeptic. I tried the 'gluten' thing because I was at my wits end. Literally. I was pretty sure I was dying, and my Dr. had given up on testing me, and on I was somewhat hoping that I would die just so it would be over. I tried the gluten thing not really believing it would make any difference because nothing else had, and I really didn't know if I cared anymore anyway.

Granted, it isn't a good as a double-blind controlled scientific study, but it convinced me.

On another note, you need to get the Red Book, Recognizing Celiac Disease - Signs, Symptoms, and Associated Conditions. There is a section ( Appendix B ) that has hundreds of symptoms and conditions and it lists all the mineral and vitamin deficiencies know to cause or contribute to that condition.

[ravenwoodglass]

Hi raesue,

I just wanted to address the 'placebo' effect. For some people, removing the gluten from the diet can indeed produce a dramatic, almost immediate response. It did with me. Within two days I felt like I was high. I felt physically better than I had in years. And I don't think it was a placebo effect for a couple reasons: 1) Immediate (2nd day) change in my physical symptoms - specifically absence of daily (for years) diarrhea; 2) The effect continued! Plus the symptoms returned with a vengeance upon accidental (unknowning) ingestion of gluten.

This was me also and I had suffered daily and nightly D with a lot of other problems for over 15 years.

If you are going to go with Quaker products for rice cakes go with the large ones. On their website they make no mention of the small ones being safe but I did find this:

Open Original Shared Link

"Quaker cares about the health and safety of its consumers and is dedicated to providing great-tasting snack options with the most accurate product information as possible. The rice cake recipe hasn

[mommida]

If you already went gluten free the blood test will NOT be accurate.

I agree with the poster that said be careful with the gluten free oats.

A sparten brand "soy sauce" is gluten free too.

You will find out a lot of mainstream products are lacking gluten as an ingredient and should be safe to eat. Some products have a lot of Celiacs complaining about them (Quakes seem to have a lot of complaints here) I suggest you keep a food journal to find hidden gluten, cross contamination, or possibly another intolerance.

The poster who told you about his changes on the gluten free diet was the exact way I would describe our family's experience. It was so fantastic, I thought it had to be a placebo effect. Then when that gluten accident happened, YIKES I was really sick. Some of the slip ups caused projectile vommitting, instead of just stomach cramps and "D".

[raesue]

If the cross contamination issues are so bad, the lactose thing may not even be an issue. Both times happened after eating at work. Our eggs and omelettes automatically come with toast, so the entire area surrounding the toasters is frequently covered in crumbs. This surrounds the cold bar. How much concern are grill surfaces, egg pans, and spatulas? Also, do I need to worry about such things as plates and silverware? You guys are all so helpful, I really appreciate it!

[raesue]

Hi raesue,

I just wanted to address the 'placebo' effect. For some people, removing the gluten from the diet can indeed produce a dramatic, almost immediate response. It did with me. Within two days I felt like I was high. I felt physically better than I had in years. And I don't think it was a placebo effect for a couple reasons: 1) Immediate (2nd day) change in my physical symptoms - specifically absence of daily (for years) diarrhea; 2) The effect continued! Plus the symptoms returned with a vengeance upon accidental (unknowning) ingestion of gluten.

Your number 1 is exactly the "feeling better" I was talking about. Along with the constipation (I know, those two opposites do not belong together, right) and horrible pain.

[GlutenFreeManna]

If the cross contamination issues are so bad, the lactose thing may not even be an issue. Both times happened after eating at work. Our eggs and omelettes automatically come with toast, so the entire area surrounding the toasters is frequently covered in crumbs. This surrounds the cold bar. How much concern are grill surfaces, egg pans, and spatulas? Also, do I need to worry about such things as plates and silverware? You guys are all so helpful, I really appreciate it!

It does sound like those eggs would not be safe. If the plates come premade with toast already on the plate touching eggs then you cannot just take the toast off and eat the eggs and be okay. Same thing with a salad. You can't just order a salad and pick off croutons and expect not to get cc'd. Some people claim they are not that sensitive and may do these things without noticeable consequences, but it is really not advisable. Even if you don't have severe symptoms (sounds like you do so this may be a moot point) that doesn't mean that damage isn't happening due to cc. Another thing to worry about with eggs is that some places put pancake batter or flour into omlets and scrambled eggs to make them fluffier. IHOP does this for sure. Grill surfaces that are shared are a concern and should be avoided. In your own home you will need to replace any scratched non- stick pans as gltuen can get in the scratches and contaminate your gluten-free food. Stainless steel pans can be scrubbed really well. Cast iron can be reseasoned in the oven. Also consider replacing any plastic or wooden cutting boards, colanders, and wooden spoons. Plastic spatulas may be okay if they don't have scratches but if they are old and have lots of little groves, consider getting new ones. Plates and silverware should be fine, but if you have baked a lot in the past you might consider running everything through the dish washer and wiping down the drawers and cabinets. Flour can go in the air and stay there for several hours and it lands in fine layers of dust on everything. So best to do a deep clean if you are turning your kitchen gluten-free.

[domesticactivist]

Hi and welcome,

Even if you don't ever feel sure you have celiac, you can certainly stay around here. No one has kicked me off yet! (See signature and my blog (from profile) for the details if you're interested).

Were the costs you cited for the blood test or the scope, or both? If you can get the blood panel before going gluten-free (reintroduce gluten until the blood test, that is) it could be good for convincing family members and friends to support you. However, even a positive diagnosis doesn't change some people's minds. In the case of your work, having a positive diagnosis could give you legal standing for getting that $.30 added back on your pay check and having reasonable accommodations made to help you prevent exposure to gluten on-the-job. In our case, we decided the risks of reintroducing gluten were too high, and we tell people that we must "act as if" due to extreme symptoms. For people who aren't close, we just tell them our son has celiac disease and we've committed to the diet.

As for your boyfriend - he is absolutely right about whole foods. They are SO much better for you. However, I hope you can get him to take being gluten-free seriously as well.

My son's rhumatoid arthritis problems, anxiety, and digestive symptoms had improved a lot within the first couple weeks of being gluten-free, but he wasn't all the way better. All of my issues had gotten worse gluten-free. We also kept getting glutened by cross-contamination. (DO NOT eat the food from your work!) We actually still felt like crap until we:

• deep cleaned our kitchen and stopped bringing in any gluten
  
• reseasoned cast iron, replaced serrated knives, cutting boards, plastic storage containers, got rid of scratched pans, washed all old containers, got rid of appliances that could have gluten trapped in them (mixers especially)
  
• were a few weeks into the GAPS diet (a healing diet with no grains, very limited sugars, lots of bone broth, cooked veggies, and fermented foods)