raesue
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My daughter's symptoms aren't that bad.... yet. She sounds like I did at her age, though, and I'm pretty miserable at this point. By experimentation with diet, we both seem much better gluten free. When our results came in, I gave her the choice whether to adhere to the diet or not. She chose chicken nuggets from burger king. It was the first gluten meal for both of us in 4 days. She decided to go gluten free after her first trip to the bathroom. The next morning she still wanted gluten food the next morning, and we both had frosted mini wheats. The evening, we lined up at the bathroom at the same time. That night, she complained of hemorrhoid like symptoms. This was two days ago. She has since been with my parents for the weekend, and my mom is to be keeping a food journal for me.
I don't think she's seriously ill at this point, but I believe she is headed that direction. It's just so much easier to be angry and defensive over your child than yourself. I'm afraid it does seem necessary to have her diagnosed to be taken seriously by the school. I realise I could just pack her lunch in future years and be good, but she's starting kindergarten where I know there will be daily snacks in the classroom.
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What I really want is scientific proof to throw in his face and scream STFU! or maybe I just want to rant. In his mind, no tangible evidence = nothing there
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I'm wanting to be told something other than "its all in your head". i was even straight called crazy yesterday. my incredibly supportive boyfriend/father of the five year old child occasionally doubled over in pain from cramps thinks a negative blood test is sufficient reason to forget all of this. he even suggested I let him support us and.go back to school or at least begin socializing more with friends to get myself to stop creating health problems for myself and dragging our daughter into it. I'm making sure I'm not just missing something here in that my experiences are lesser or different than those of you who can actually prove something is really going on with you.
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I'm not sure of the correct place to pose a question about everyone else.
Kind of gross question:
Is it "normal" to have frequent, almost daily, constipation with cramps that rapidly transforms into extreme urgency and diarrhea?
Is it "normal" for this diarrhea to involve such things as undigested food, malabsorbed fat, mucus, and blood?
Do these things happen when there is nothing wrong with a person?
Was I lying when I told my daughter that she had to have blood work because most peoples tummies do NOT hurt everyday and diarrhea is NOT supposed to be the normal form of bowel movement.
Seriously, can we have all these issues without there being anything wrong with us?
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I feel exactly the same way. I wish it were just doctors, though. my boyfriend of nine years is telling me its all in my head. I wanted the test so badly just so I could prove I had a justifiable concern. I read a study someone had mentioned on a forum by Dr Peter green at Columbia. he looked at blood test results for biopsy diagnosed patients and found that in practice, the tests are only 70% accurate. for those without complete villous atrophy, the positives were below 50%. he also found no positive ttgs in that group. apparently the rate of iga deficiency in celiacs is 20%. it really made me feel like the test is practically useless. I'm sorry to hear about your trouble, but its nice to find someone else in the same situation. I think everyone I know is getting tired of hearing about it.
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I have always had an 'allergy' to soap. I've never had it checked out. Every time I bathe, I get this itchy rash all over, mostly legs arms and belly. The absolute worst is dial bar soap. That is so bad that if I shower after it has been used I practically scratch my skin off. Could this be a gluten thing? If so, what ingredients should I be weary of?
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Are they safe?
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[quote name='Jestgar' timestamp='1307099249' post='7052
If you were vegan would you ask for a doctor's permission to feed your children a vegan diet? If you were asian would you worry about them eating rice
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Forget it! Thank you for the response, but I have changed my mind. Immediately after starting this thread, I ate two slices of wheat toast to start preparing. I hurt before I even finished and was in the bathroom before I could even wash my plate. If two slices of bread make me feel like I'm dying, I'm done with it. As of this moment, my daughter and I are both self diagnosed celiacs just because I said so. Skeptics can call me a hypochondriac all they want, but they're not the ones eating this way.
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I finally found an affordable estimate for testing. Now I just need to get my doctor to send in an order. How long do I need to go back onto a gluten heavy diet to get a positive result?
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I am currently in the process of performing a gluten elimination test on myself for possible self-diagnosis because of family history and a plethora of symptoms. I'm doing it this way because I realized testing is not financially feasible for me. My area does have government funded health care for low-income children.
I have an extremely mature five year old. Everytime I turn down a food item, she says, "its wheat, isn't it." So she asked what I was doing earlier which was talking to my sister about possibly having her family tested. This led to a discussion about genetics and the likelihood of checking her out as well.
When she objected, I mentioned the one symptom I knew she had, occasional but severe "C". This started at the same age my mom says it did with me. This led to an overly descriptive discussion of her bms. I found out that she has "D" more often than not which is always followed by a tummyache.
The child is terrified of needles, and has begged me to just put her on a gluten-free diet instead. How important is it to actually have the tests performed? Is it enough just to make her gluten-free or to follow up in a few months with a gluten challenge like I'm planning for myself?
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There's a potluck style family gathering coming up. I never know what to bring even without dietary restrictions. The hosts are grilling burgers and hot dogs. I know of one person bringing potato salad. Anyone have suggestions/recipes of something suitable to contribute? The other people with dietary restrictions include diabetes and an allergy to alcohol. There will also be lots of children.
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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.
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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!
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First thing after work is perfect for shopping. No one is there. The night shade is a great idea. I just had an eye mask/ear plugs set. I would prefer night shift with your lifestyle. I switched to days because I have a five year old at home. I'm actually being put back on nights at my job starting this Saturday as punishment for oversleeping. The problem with night shift at my job is that management works days, so they stick everyone they don't want to deal with on nights. As a result, I spend the night babysitting adults who are less mature than my child. I hope this isn't the case for you. If you sleep straight through your first day off, you'll be all set the next day for all the errands that can only be done during business hours.
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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.
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I'm not even sure I actually have celiac disease yet. This is my tenth day without gluten. I can definitely say I have a serious issue with being hard on myself. I was a straight a student when I was younger. I hate for people I knew then or the people I actually graduated with (I went to a boarding school for Arkansas' best and brightest) to know that I dropped out of college and am working as a waitress. It embarrasses me that I'm not the doctor I was supposed to be before I failed to get myself out of bed in the morning for class.
I can't bring myself to do anything halfway. My house is dirty because if I can't get it perfect. If I try to break it up in smaller areas, I wind up hours later with a 100% spotless 4x4 square and a worthless feeling that I didn't accomplish more.
I spend slow times at work scraping carbon buildup off egg pans, which I barely set down until they look brand new. I've even caught myself working off the clock because I didn't finish one.
I just can't force myself out of the mindset that if I can't make it perfect, there's no point in trying.
I don't know if this.is what you're talking about or if I'm just crazy. I've suspected ocd for years, but the doctors have never said it.
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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.
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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?
Chest Pains?
in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Posted
My sister has been having chest pains for several months. She has no digestive complaints, but she was diagnosed with diabetes 22 years ago. 5 1/2 years ago she had half her thyroid removed. She also takes antidepressants. A couple of months ago, she underwent a stress test which found nothing.
Our grandfather has celiac disease. Because I've been looking into my own symptoms, it has been on her mind lately, and she feels that the pains tend to coincide with eating gluten. Has anyone ever had gluten related chest pain?