So Overwhelmed!

[hunter6009]

I am new to the board- nice to meet you all. I work in a lab and have been in the medical field for over a decade now. My uncle is a GI. So I'm fairly versed with what's going on, just a little skeptical right now.

After about 3 years of off/on symptoms, I decided to have a celiac panel run on myself just in case. My results were:

Immunoglobulin A, Qn, Serum- 160mg/dL (Normal is 70 - 400)

Endomysial Antibody IgA- POSITIVE

Deamidated Gliadin Abs, IgA- 136 H units (Normal is 0 - 19)

Negative 0 - 19

Weak Positive 20 - 30

Moderate to Strong Positive >30

Deamidated Gliadin Abs, IgG- 62 H units (Normal is 0 - 19)

Negative 0 - 19

Weak Positive 20 - 30

Moderate to Strong Positive >30

t-Transglutaminase (tTG) IgA- 15 H U/mL (Normal is 0 - 3)

Negative 0 - 3

Weak Positive 4 - 10

Positive >10

DQ2 (DQA1 0501/0505,DQB1 02XX) POSITIVE

DQ8 (DQA1 03XX, DQB1 0302) NEGATIVE (My only negative test! Whoo hoot )

I guess I'm just shocked! My symptoms haven't been earth-shattering or anything. I guess I get diarrhea occasionally. Mostly after the stomach flu or illness is when I notice it. Everyone else in the house goes back to normal within a week or so and I'm still having diarrhea 2 months later. I also get it off/on when I eat spicy foods, etc. But nothing to write home about and very rarely has it been so bad that it would make me miserable. Only a handful of times has it truly effected my life. Most of the time it's gone by 10am and the day goes on....

Other "symptoms"? Fatigue is a big one. I'm always tired. But I also have obstructive sleep apnea, 2 small children and a full-time job! Who's not tired?!

Sometimes I guess I notice joint pain. Especially when it's cold outside or I've got a virus. My joints will ache.

But giving up gluten for the rest of my life just seems darn near impossible.

And then there is the concern for actually seeking out a diagnosis. Will my life insurance company drop me? Raise my premiums? Will my health insurance go up? What if I lose my job? Will I be excluded from future coverage or have to pay a small fortune? Why do I want to get a biopsy to actually diagnose Celiac if it's the same treatment no matter what? Cut out gluten!

And then there are my children. My one son is just like me. His tummy hurts alot, he takes a while to go back to normal once he's been ill and has diarrhea for weeks. He has GERD. He's irritable and moody at times. Are those really symptoms though? I mean, really? Everything seems to be a symptom of celiac. Wrinkles and hangnails and grey hair? I'm sorry, I know that's harsh, but you read these list of symptoms and start thinking "oh, maybe that's a symptom?" when maybe it isn't at all!

Do I test them? My uncle (GI doc) says not unless they are symptomatic. He says treating asymptomatic people is useless b/c how do you manage them? Reduce their quality of life by giving them a ridiculous to follow diet (his words, not mine) and give them anxiety and depression for a life-long diagnosis when they don't even have symptoms?

I just don't know what to do! Is it worth it? Can't you die from second hand smoke, too much sunlight, and eating too many twinkies just as easily and eating gluten if you have celiac? When does it stop?

I'm so frustrated and stressed out right now and I just don't know what to think.

My boys' pediatrician, also a friend of ours, said to just cut out gluten from their diet for a while and if they respond, he suggests testing them. Well one of my boys doesn't have symptoms and if I cut out gluten, then testing would be falsely negative for them if they do, in fact, have celiac.

My family doesn't seem to be very supportive either. My father, also a physician, says he won't test himself b/c of the life insurance/health insurance hike he'd likely get if he did test positive. He says he's just as likely to be hit by a bus then die from eating gluten and he's lived this long so what's the point?

I'm sorry if I'm ranting on here. I'm just so frustrated right now and not sure what to do for myself, or my family.

Thanks for your advice and future support. I know I'm going to need it!

[GlutenFreeManna]

Hi welcome to the board. I hate to tell you this, but your uncle is the type of doctor most of us here HATE to deal with. He is wrong to say that going gluten free leads to depression and reduces quality of life. The truth is depression and axiety can be a SYMPTOM of continuing to consume gluten. What you mentioned about your sons symptoms sound like symptoms of gluten intolerance or celiac as well. As far as quality of life, my quality of life has only improved with a glutne free diet. Iw as nearly bedbound with pain, unable to work for three years due to this unexplained illness. I had to drop out of grad school I was so bad. Now I'm almost ready to go back to work or school. My "quality of life" was ruined for years by people like your uncle with the mindset of "food cannot possibly be responsible for all these symptoms".

As far as your insurance concerns, I have not yet heard of anyone losing their insurance because of getting diagnosed with celiac. Maybe some people that have will correct me with their stories, but I think your concerns are unfounded unless you are currently uninsured and you plan to seek insurance after getting a diagnosis. Secondly I would think your insurance company would be more likely to reject your claim for intestinal cancer treatment later on if it finds out you tested postive for celiac, but continued to eat gluten-containing food. While it may be rare, cancer is one of the risks you take if you continue to eat gluten. As well as a whole host of other auto-immune diseases that can appear with untreated celiac.

Finally, Just because your relatives have not yet died because of undiagnosed celiac does not mean it's wise for you to continue on as if you don't know anything about it. If your doctor told you your were borderline diabetic and your relatives said, "I eat sugary snacks every once in a while and it hasn't killed me yet," would you just ignore the doctor's order to watch your sugar intake? I'm not trying to be too hard on you, I think you know what your need to do. I'm just trying to give you a swift shove in the right direction. The truth is first degree relatives are at much higher risk of having celiac or gluten intolerance. At the very least you need to get your children tested. Sometimes a gluten free diet trial period is the best test and it's okay to do it that way if you don't want a doctor diagnosis to go on their medical records. Either way this board will be here to help you and them adjust to the gluten free lifestyle.

[GlutenFreeManna]

I also wanted to add your uncle is dead wrong about asymptomatic celaics. Yes it is harder for people who are asymptomatic to know if they are sticking to the diet, but the way they are often "treated" is to get retested every six months or so to see if their antibody level has decreased. For your uncle to say he would not know how to treat an asymptotmatic celaic just shows that he is not an expert in this illness. With all due respect to your uncle and his GI credentials if your boys test positive you should find a different GI than him to take them to. You and your boys need a doctor that will know to test for vitamin deficiencies and other auto-immune diseases like thyroid disease.

[kareng]

Hunter, addressing your family problems could take years. So, I am going to tell you about a couple of kids we know, now late teens, who were dxed years ago but it was too much trouble for the parents to enforce or encourage the gluten-free diet.

A is a stunningly beautiful young lady. Barely 5 feet tall and 90 lbs. Her mom is almost 6 foot tall. She never feels good, has menstrual problems, and this crazy lack of direction from her mom on eating has caused her to be anorexic. She told my son she is afraid to eat. He tried for awhile to point out things at school like yogurt and fruit but had to give up. She is more messed up then he can deal with.

B is also stunted in his growth. He has attention issues and brain fog. Does drugs to feel better.

Know an adult dxed as a kid who doesn't follow the diet. She falls a lot. Has had to have knee surgery, bones pinned, multiple GI surgeries. She constantly has Gi upsets.

My kids don't even have any symptoms but I got them tested. They are negative for now. They will re- test if any thing goes wrong. If they were diabetic, I would want them to follow the diet, test their blood and regulate the insulin. I need to stop. You have to decide what kind of parent you are.

[hunter6009]

Thanks for your replies. It's very overwhelming at first, especially when you don't have many symptoms to begin with (or any that are worth noting). I think that makes it even harder for someone who has celiac. At least if I had diarrhea that effected my life, and any other symptoms, then going gluten free would make me feel better and then I'd think "this diet is so worth it! I feel better!". Going gluten-free just in the hopes you don't develop any other issues is hard, at least for me.

As for my children, I'm taking one step at a time. First I need to figure out what all this means for me. I go to the doctor tomorrow. No, not my uncle, but a GI in town that specializes in celiac. My uncle is NOT someone I would see for celiac. It's definitely not his specialty. However, I do think he was talking about quality of life reduction in asymptomatic patients. I think they tend to take the diagnosis harder, as has been proven, b/c they don't feel any different by going gluten-free. They just feel punished and restricted (according to him). I can commiserate. This is basically how I feel right now, so I can see how others might feel the same! Now his theory of ignorance is bliss for those who are related to celiacs (by not testing asymptomatic children, etc) is his own theory, not mine. If they are celiacs, they're celiacs and need to be treated as such.

I'll be very interested to speak to my GI tomorrow about all this.

I do, however, know 2 celiacs whose life insurance either a)dropped them, and raised their premiums. Scary, but true. I think that's very sad as well. Such an unfortunate system we live with.

Well again, thanks for the replies, support, and your advice. Let you know more tomorrow after my appt! My GI is supposed to be the "celiac dude" in town. He's the head of the local celiac support group (as their medical liason) so I'm hopeful he'll be a good resource for pointing me in the right direction.

As a side note, does anyone have any info on the amount of damage occasional gluten ingestion has? For example, once slice of pizza a year, or accidently getting gluten in your food? Is reduction better than nothing? I can't seem to find anything regarding this.

Thanks again! This site and each of you are wonderful resources! Please forgive my venting, and I hope no one takes offense. I'm new to all of this and taking it hard I guess!

[GFinDC]

Happy Halloween!

Here is a short article that talks about latent celiac and silent celiac. Latent Celiac Disease Afflicts Many Who Tolerate Gluten Basically, people who have celiac but little or no GI symptoms. Anyway, they may start out that way but get sicker as time goes on. And there are many other negative affects of celiac beyond the gut symptoms. Like you said, it has a multitude of affects/symptoms. Some of them include R. arthritis, brain affects (ataxia, schizophrenia), weakness, confusion, sterility, depression, other auto-immune diseases etc. Not the kind of stuff you want to mess around with. gluten-free is a change in diet, and the way we look at food. But you will most likely end up with a healthier, happier family as a result. Since celiac is a herdiatary condition, you might want to look back at your family history and see if there are other auto-immune diseases that have occurred. Diabetes, lupus, bowel cancers, R. arthritis, Hashimoto's thyroiditis, are just a few of the things that can be associated with celiac diesase. Extra thirds eyes in the back of the skull, long hair and fangs on full moons, a craving for raw fish. Since it is Halloween, I figure it's ok to try and scare you a little. So BOO! Those last three are not real that I know of at least. Welcome to the site and it's good to have you here!

[kareng]

Happy Halloween!

Extra thirds eyes in the back of the skull, long hair and fangs on full moons, a craving for raw fish. Since it is Halloween, I figure it's ok to try and scare you a little. So BOO! Those last three are not real that I know of at least. Welcome to the site and it's good to have you here!

Mine went away when I went gluten free. Also, the craving for fresh brains, eyes of newt & tongues of dog. (that third eye was handy with kids)

Sounds like you have a good doctor choice. Let us know how it goes.

[laurelfla]

Just wanted to wish you well on the dr.'s appointment tomorrow! This is a wonderful place for support and I am glad you found it. My symptoms were not earth-shattering, and sometimes I still say I think this disease is made up but I don't cheat... the word "cancer" is enough to scare me, and I've found ways to cope. I did start with therapy though!

Let us know how it goes.

[GlutenFreeManna]

I'm sorry if my first posts sounded harsh. I understand what your are saying about this life change being overwhelming at first. It will get better, I promise. It sounds like you are on the right track in going to see a specialist. As far as having a slice of regular gluten pizza once a year, it's so not worth it. There are tons of gluten free pizza options out there. I like some of them better than the gluten pizza I used to eat. Go to stillridingpizza.com and see if they supply any restaurants in your area. Or go to glutenfreeregistry.com and click on the "I want pizza" button and it will show you if there are pizza places in your area that carry gluten free crusts. The best homemade gluten-free pizzas I have had are King Arthur's recipe here: Open Original Shared Link

And a mix called Chebe: Open Original Shared Link

As far as crumbs go, if you think you are getting frequent cross contamination or you think you don't have the will power to be 100% Gluten free, then you should set up a retest as often as your insurance will allow as a check for yourself. If you get tested and you still have some elevated antibodies then you need to be better about preventing cross contamination or figure out what you are eating that you thought was gluten free. This will work well for you since you have positive test results. Some of us are diagnosed with no positive test results, just a positive response to the diet. Also, you say the symptoms were not that bad for you ever...Well I hate to tell you this, but you MAY notice your symptoms of accidental gluten ingestion are stronger after you have been gluten free for a little while. Not everyone has this happen, but it is common to read about people here that thought they (or their children) were asyptomatic until they did a gluten challenge and the ugliest symptoms resulted.

[hunter6009]

Thanks again for the replies! I had my doctor's appt today and he was WONDERFUL! Such a positive and educated physician. Those can be tough to find! My job is working with physicians everyday and let me tell you not all of them are cut from the same cloth! He was very motivating, humorous, and knowledgeable about the disease. I knew quite a bit about it prior to going, so we got to "cut to the chase" on things and talk statistics, my favorite thing! I feel comfort in numbers. Ha!

Anywho, I obviously have celiac, no surprise there. I do my small bowel biopsy in a few weeks to determine how bad, if any, the damage is to get a "baseline" so he says. Good answer to my "why biopsy" questions.

AND, this physician was so good he detected a heart murmur I never even knew I had!

His staff however, was another story.....they were nuts in there and goofing off! Totally unprofessional. But I digress....

I, too, have the occasional third eyeball and green hair sprouting from my ears! Guess I'm not alone

And yes, for those who are curious, my children will be tested, although that was never really an issue to begin with.

BTW-GlutenFreeManna...I don't think you were harsh! I have thick skin and no matter what someone else says I don't always agree, but I will ALWAYS respect your opinion!

Luckily I get testing for free, so no worries there. I'm very lucky to have that benefit.

Thanks again for the support and I look forward to getting to know each of you!

[coffeetime]

I'm so glad you found a great doctor, I think that is half the battle. I found out after a screening after my brother was diagnosed, other than migraines and random thyroid issues, I had no symptoms, and actually didn't know those were symptoms. Two of my children are positive as well, my third will have his yearly physical later today and that is one of the test we will ask for. I think a lot of people we come in contact with who do not think gluten is an issue, place way to much emphasis on food. I'm from the south where the amount of your love is directly correlated to how much of someone's chicken and dumplings (or other comfort food) you eat. I try to remember the old saying "eat to live" don't "live to eat". Good luck and this board is a wonderful source of information. I quickly check these boards daily and always find a quick tip or product to try.

[aLayla]

Hey Hunter!

I was told bloodwork alone was not conclusive, and that biopsy is needed too.. Also, sometimes one of them can be positive and the other negative.. Someone told me they did an 'iron test' for someone in that case then? (Would that be an adequate test?)

(Sorry I'm not a native speaker of English and don't know the name of that test in English..)

You're lucky you can get so many tests so quickly for free!!

With the so many tests, do you happen to know which of the blood tests are best?

And whether it's better to get tested for lactose intolerance before or after? (Or doesn't matter?) Any info on that?

Going gluten-free (in the past) was stressful at first, but then quite an adventure! Even my Dad now likes ammaranth a lot! And I/we discovered some other exotic foods too!!

It may also be good to talk to other celiacs and maybe a support group.. I know someone who has it and she was totally sweet about asking her about anything if I get diagnosed..