Just Diagnosed. Kind Of In Denial About It.

[Laudahwiz]

So my mom (a chiropractor) had a co-worker of hers (she does acupuncture, naturopathic medicine, homeopathy, ect.) do some blood tests on me (which I didn't really question because I've had a lot of those done) a couple weeks ago. Yesterday the results came back so I went to work with my mom and talked to her co-worker who diagnosed me with Celiac based on the results of my blood test. This was really out of the blue for me - my mom suspected that I had it but didn't say anything about it to me, just had the tests done - so it was kind of like a bomb dropped on me so I'm still reeling over it. I read that in order to get a legitimate diagnosis you have to get a biopsy done on your small intestine but we don't have the money for that unfortunately, so I guess I'll just have to trust this diagnosis even though I'm skeptical.

 

I just find it weird I guess that I never had any physical symptoms - never any digestive problems or headaches or things of that sort - but I've struggled with depression and other mood disorders since I was 6 or 7 and have also experienced 'brain fog' and some tremors, which apparently are less common symptoms. I have trouble believing that all the emotional problems I have can be attributed to Celiac, but obviously if a gluten-free diet helps then I'll be overjoyed.

 

I'm having a hard time though, I actually kind of had a breakdown about it today which I feel really stupid about because really it shouldn't be such a big deal. But I'm just worried about a lot of things, like being vegetarian and gluten free at the same time, going out to eat with the possibility that every little thing could have come into contact with gluten, and also generally being a burden on people.

 

But I'm hoping this forum will be really helpful. Sorry for the venting in this post if that's not something people normally do here.

[BrennanaBread]

We're in the same boat. I was in denial, and I decided to stuff my face with gluten to prove I didn't have it. I'm sick. Shocker. I'm only about a month in, and I'm angry and full of resentment. It actually makes me angry when my girlfriend orders food I can't eat at our favorite restaurant. How messed up is that? Right now I just want to order a freaking pizza, and I can't, because even the Domino's gluten-free pizza poisons me. I came to this forum for the same reason you did. I hope it helps you.

 

-B

 

 

 

 

 

 

So my mom (a chiropractor) had a co-worker of hers (she does acupuncture, naturopathic medicine, homeopathy, ect.) do some blood tests on me (which I didn't really question because I've had a lot of those done) a couple weeks ago. Yesterday the results came back so I went to work with my mom and talked to her co-worker who diagnosed me with Celiac based on the results of my blood test. This was really out of the blue for me - my mom suspected that I had it but didn't say anything about it to me, just had the tests done - so it was kind of like a bomb dropped on me so I'm still reeling over it. I read that in order to get a legitimate diagnosis you have to get a biopsy done on your small intestine but we don't have the money for that unfortunately, so I guess I'll just have to trust this diagnosis even though I'm skeptical.

 

I just find it weird I guess that I never had any physical symptoms - never any digestive problems or headaches or things of that sort - but I've struggled with depression and other mood disorders since I was 6 or 7 and have also experienced 'brain fog' and some tremors, which apparently are less common symptoms. I have trouble believing that all the emotional problems I have can be attributed to Celiac, but obviously if a gluten-free diet helps then I'll be overjoyed.

 

I'm having a hard time though, I actually kind of had a breakdown about it today which I feel really stupid about because really it shouldn't be such a big deal. But I'm just worried about a lot of things, like being vegetarian and gluten free at the same time, going out to eat with the possibility that every little thing could have come into contact with gluten, and also generally being a burden on people.

 

But I'm hoping this forum will be really helpful. Sorry for the venting in this post if that's not something people normally do here.

[1desperateladysaved]

Welcome,

 

Most of us started out surprised and overwhelmed.  I suffered mostly from mind fog and fatigue, so I know that can happen.  I get irritable when I accidently get glutened.  All the best to you and your family.

 

D

[kareng]

I think I would check what tests were actually run before I believe a diagnosis. There are a lot of people running tests that have no real scientific basis and do not diagnose Celiac.

Open Original Shared Link

[Laudahwiz]

I got tested for things like 'Transglutaminase' and tested positive (is positive the right term? it was out of range anyway) for IgG but not IgA, and I understand the latter makes for a more definite diagnosis? I'm talking to my mom about getting a biopsy and I was wondering how many people here got diagnosed by a biopsy versus just blood screening?

 

Thank you for the responses.

[1desperateladysaved]

  I am coming from a Natural health Care Patient background. 

 

I know this isn't a picnic at first.  I spent 30 years with celiac symptoms, and toward the end, there wasn't anything fun about it!  I believe things will get better for you.

 

Perhaps you could check into your nutrient levels.  These could be used as a gage to see if the villi are working.  I am not sure if the cost would be less than the biopsy.  A Spectra-cell test is a great test for nutrient levels, and it can be very complete or perhaps less complete.  I think You could just check levels on a few  "often- low- for people with celiac" nutrients..  It tests the white blood cells for nutrient levels.  My functional medicine doctor say that it is better than a serum nutrient level test, because the cells can be very depleted of nutrients, before the blood levels will be compromised.  Another test is to go gluten free and see what happens, but if you are feeling skeptical, you should test until you believe it.

 

Spectra Cell is now covered by Medicare, and some private insurance. 

 

Some nutrients often low include:  These are the ones which I can think of off the top of my head.  More might be nice.

Iron/ferritin

Vitamin B

Magnesium

Vitamin D

 

If you care to, you could post the celiac panel results, whatever you have, and someone could tell if you had the tests people her suggest.   Do you have family history of celiac, that can help to decide?   

 

  I am under the care of a Functional Medicine Practitioner along with my chiropractor,  and I am using diet and supplements to recover .  IN the past year my nutrient levels have increased to normal and even good.  My anemia is gone.  I am about 1 1/2 years gluten free and very glad for it! 

 

Best wishes,

 

D

[cyclinglady]

Welcome to the forum, and yes, you can vent all you want!!!!

 

How lucky that your mom was able to diagnosis you!  Most of us here have to deal for years with illness and then struggle to get a diagnosis.

 

I had a biopsy done after my blood panel came back positive (just barely).  One, I wanted to know the extent of damage and two, to help me wrap my head around a celiac disease diagnosis.  My husband has been gluten free 12 years and I couldn't believe that both of us would gluten issues!  It's also made it easier in getting the rest of my family (extended) tested.  They believed that biopsy which show moderate to severe damage.   I was just anemic and didn't have any tummy issues, but I was kind of crazy (or had anxiety) which I thought was just the old menopause thing, but it was gluten!!!!!  I should have known because when my husband gets glutened he becomes really grumpy!

 

Getting a biopsy is though, is a decision you need to make with your mom.

 

Going gluten free is not bad.  I don't miss foods since I have found substitutes (e.g. chocolate mayo cake that my gluten eating daughter requests!)   My family and friends have been really supportive (if they weren't I'd dump them!)

 

You'll be feeling better soon!

[Adalaide]

I got a phone call to let me know that my biopsy was positive for celiac. I know it's probably nearly impossible to believe, but I didn't even know I'd had a biopsy. I was devastated. I, a grown woman in my 30s, promptly went to my room and cried myself to sleep. Not crying like normal, blubbering like an idiot, racking sobs with snot running down my face.

 

The next day I got up, hit google and got my act together. It took me days of research, an appointment with my doctor (in which I was told to go home and google "gluten free") and getting my birthday that week under my belt to feel ready. The day after my birthday I hit the grocery store, bought my last donut and the following day I went gluten free and never looked back. I can't deny it was hard, but look at the alternatives. Look at what happens if you don't. Even with no overt physical symptoms, your prognosis isn't good.

 

I know you say it shouldn't be a big deal, but it is and it's okay to feel like it is. But at some point in the pretty immediate future you're going to have to accept it and deal with it. It's okay to give yourself a short time (God knows I did) but if you try to put your head in the sand all you accomplish is suffocating.

[moosemalibu]

Welcome! First off, you are entitled to go through the coping stages of grieving for your pre-diagnosis days. It is a natural, normal process. Don't let anyone tell you that it is not a big deal. Because it is a huge lifestyle change. You can adapt and you will, but you are entitled to be angry, to be sad, to be in denial, but eventually you're gonna have to get accept it and carry on. I am a little bit sad still but I  have been 100% faithful to the diet and lifestyle.

 

Having your mom totally on board with the diet will help too if you live with her. It takes a lot of changes in the kitchen to make sure you don't get sick through cross-contamination. 

 

Also - depression is related to celiac disease. The majority of the seratonin cycle happens in the gut and when it's damaged it doesn't get to your brain the way it should and you can get mood disorders. I myself suffer a bit from depression. Many on the board that have been on medications for depression have ditched them or greatly reduced their dosages once their bowels healed. I'm hoping to feel improved after I'm healed. Just because you don't have typical GI symptoms doesn't mean you cannot have celiac disease. There is "silent" celiac disease and even DH that don't necessarily manifest through GI symptoms.

There are several vegetarians on this forum so hopefully they can chime in and help you out with your dietary veggie questions. 

[Laudahwiz]

Perhaps you could check into your nutrient levels.  These could be used as a gage to see if the villi are working.  I am not sure if the cost would be less than the biopsy.

I actually think I did get those checked as well, but there wasn't anything really abnormal about them. I think Vitamin D and maybe Zinc were slightly low. I'll call my doctor and get her to refresh my memory on those.

 

If you care to, you could post the celiac panel results, whatever you have, and someone could tell if you had the tests people her suggest.   Do you have family history of celiac, that can help to decide? 

My mom has been eating mostly gluten free for a while because she has a bad reaction to it (mainly bloating) but she's not sure if it's actually Celiac or just an allergy or what. She's going to get her blood tested too to be sure. Two of us eating gluten free makes it a lot easier.

Here are my test results: http://i885.photobucket.com/albums/ac54/cyndersbane/TestResults_zps7ff6804d.webp My doctor thinks that this panel confirms that I definitely have Celiac but when I did research what I read told me that it's more of a strong indication that I have it rather than a definite diagnosis. Could maybe some of you look at it and say what you think? I figure that on the off chance I don't have Celiac, going gluten free is going to do me good so I may as well do it anyway. 

 

Thanks so much for the help and replies.  I'm feeling a little better about this now, though it's still really overwhelming.

[Pegleg84]

Welcome! Vent all you want. That's what we're here for.

 

Bloodtests for Celiac are more likely to be false negative (like mine) than false positive, so I wouldn't dismiss the results, though maybe getting them done again making sure it's the full panel might not be a horrible idea. Biopsy is the "gold standard" because it shows actual damage. However, the only real way to know if gluten-free is right for you is to, well, go gluten-free and see what happens.

 

Emotional problems can indeed be a symptom. It was one of my biggest issues before going gluten-free. I was depressed, and often had anxiety/panic attacks. After going gluten-free they have all but disappeared. If I start feeling ansty and anxious for no particular reason, I know I probably got glutened. My sister had it even worse than me, probably wasn't able to absorb the medication she was on (and/or had bad reactions to it), and had some pretty scary moments before she went gluten-free, dropped the meds, and is so so much better. Not perfect (even if you have Celiac, it might not be the cause of all your issues), but she's able to manage it now.

 

I would talk to your doctor about the results, and see if there's anything else you can do to confirm diagnosis through testing BEFORE you go completely gluten-free (test results will not be accurate if you aren't eating gluten). Once any other tests are done, cut the gluten for at least 6 months. If it makes absolutely no difference, then you might not have it, but I bet you'll be surprised.

 

Anyway, good luck. Feel free to ask lots of questions. We're here for you.

[kareng]

As we tried to explain on your other thread, those are not tests for Celiac disease. I'm sorry someone mislead you. I would hate for you to believe you have a serious autoimmune disease if you don't.

[Laudahwiz]

I guess I've been a little confused, and feeling really skeptical about this diagnosis now. I'm going to talk to my mom about getting a blood panel done by an MD doctor and see what comes of that. Thanks again for the help

[kareng]

I guess I've been a little confused, and feeling really skeptical about this diagnosis now. I'm going to talk to my mom about getting a blood panel done by an MD doctor and see what comes of that. Thanks again for the help

Good. Come back and update us on how it goes!

[AVR1962]

I too was in denial and actually avoided the gluten-free diet for a while because I didn't think it applied to me, I have no idea now even why. Your mom must have seen something in order for her to push for this test. You are saying you didn't feel symptoms but I am wondering what your mom picked up on.

 

No, you do not have to go as far as a biopsy.....if going gluten-free will improve your well being then go for it!!

 

Annette

[bburmeister0407]

We're in the same boat. I was in denial, and I decided to stuff my face with gluten to prove I didn't have it. I'm sick. Shocker. I'm only about a month in, and I'm angry and full of resentment. It actually makes me angry when my girlfriend orders food I can't eat at our favorite restaurant. How messed up is that? Right now I just want to order a freaking pizza, and I can't, because even the Domino's gluten-free pizza poisons me. I came to this forum for the same reason you did. I hope it helps you.

 

-B

 

Oh my gosh yes. I did that just yesterday. I work for Pizza hut and brought home a ton of free breadsticks. I got sick and tired and grabbed a bag yesterday to prove I could do it...was up until midnight with anxiety and severe bloating...serves me right.

[tonalynn]

I know exactly how you're feeling about your diagnoses. I had never even heard of celiac disease when I got my DX. I was trying to find the cause of my fatigue, lack of energy, weight gain and if my Hashimoto's was under control. I had read that a gluten free diet was good for Hashi's but I told my family "If this doc recommends I go gluten free (it's also kind of a trendy thing where I live, which made it even less appealing to me) I'm going to tell her to shove it!" Then came the DX and I had no choice.

 

I've been gluten-free for a little over 2 months. So far I don't feel one bit different. One of my anti-depressants was actually just increased, since they haven't been working as well as they should for about 8 or 9 months. I've been depressed all my life, and apparently the double gene from my parents could attribute to that.

 

It's ok to be mad. Get mad! Feel sad, lost, alone and scared. It's all natural. I'm furious about it, and maybe if I felt better I could move on to the next stage, but so far I don't. Cry your eyes out (I sure have), scream and throw pillows. This is a HUGE change, especially if food has always been an important or emotional aspect of your life, rather than just eating to live. It's overwhelming at best, and frustrating when you realize all the areas of your life being gluten-free impacts.

 

Whoever said "I miss pizza" I feel you!! So many nights I don't feel like having any of the food in my house, I don't like cooking, and I miss the ease and convenience of just ordering a pizza, having it delivered and saving some for the next morning. It makes me mad that yes, I CAN get gluten free pizza, but not delivered and it's at least 2-3 times the cost of ordinary pizza. And I always loved the thick crust, I was never a big fan of thin crust.

 

I'm told this gets better, so keep at it. I am seeing a psychologist and trying to start up a celiac support group to help me through this initial phase. I hope you have resources you can use to help you deal with it too.

 

And just remember...chocolate is gluten free! :-)

[jswwrites]

I am in phase 2 of this, although it's easier as a possible diagnosis than last time. I tested positive on the IgA test last last summer, but the biopsy was negative. However, I've had all kinds of random issues, the most prevalent being chronic migraines (they didn't start until Feb 2012, when I was 47). But I've struggled with iron deficiency anemia, as well as some other "wow, this is unusual" things. So today my neurologist ordered a bunch of tests, but he's looking at celiac as the most probable with the things that have popped up - none of them GI related. (He was frustrated that the GI doc was so narrowly focused on the gut, since apparently you can have celiac without that.) So I'll know later this month, but I suspect it'll come back positive. It would explain a lot. (He's testing me for a whole slew of possible auto-immune diseases -- he said he hoped I had blood left -- so it could be something else, but celiac would explain things best, at least on paper.)

 

When I was positive on the test the last time, I was freaked out the whole month until the biopsy, doing research, trying to figure out how to manage my household, where to buy Advil without gluten in it (Canada), etc. I had lunch with my daughter after my appt today (Italian, of course!), and told her I was probably at the point now where any explanation, which would likely have a treatment, would be better than these constant random illnesses that screws up my life for yet another period of time. When my son was finally diagnosed with asthma at 14, he said he felt relieved because there was both an explanation and treatment, and I get that feeling now.

 

I don't eat a ton of wheat, but I would definitely miss the periodic pizza or my go-to pasta (although Trader Joes makes a great rice one). For me, all the weird things gluten is in, like medicine, is the hardest to figure out. And the duplicate cooking it will require for my family will be really annoying for awhile (I never cooked my kids separate meals when they were young, and I really am not looking forward to starting now!). And I do love to bake............ meh. I'm not having a melt-down, but I can't say it wouldn't suck.

[BrennanaBread]

Oh no, Advil has gluten?! I get horrible migraines (so badly that I'm on antiepileptic medication for them) and the occasional one leaks through. Only cure is 3 Advil and 3 Excedrin. Say it ain't so.

[Pegleg84]

last I checked, Advil is perfectly safe, just so you don't freak out.

[BrennanaBread]

Thank you! I was wondering what I was going to do.

[Gemini]

I am in phase 2 of this, although it's easier as a possible diagnosis than last time. I tested positive on the IgA test last last summer, but the biopsy was negative. However, I've had all kinds of random issues, the most prevalent being chronic migraines (they didn't start until Feb 2012, when I was 47). But I've struggled with iron deficiency anemia, as well as some other "wow, this is unusual" things. So today my neurologist ordered a bunch of tests, but he's looking at celiac as the most probable with the things that have popped up - none of them GI related. (He was frustrated that the GI doc was so narrowly focused on the gut, since apparently you can have celiac without that.) So I'll know later this month, but I suspect it'll come back positive. It would explain a lot. (He's testing me for a whole slew of possible auto-immune diseases -- he said he hoped I had blood left -- so it could be something else, but celiac would explain things best, at least on paper.)

 

When I was positive on the test the last time, I was freaked out the whole month until the biopsy, doing research, trying to figure out how to manage my household, where to buy Advil without gluten in it (Canada), etc. I had lunch with my daughter after my appt today (Italian, of course!), and told her I was probably at the point now where any explanation, which would likely have a treatment, would be better than these constant random illnesses that screws up my life for yet another period of time. When my son was finally diagnosed with asthma at 14, he said he felt relieved because there was both an explanation and treatment, and I get that feeling now.

 

I don't eat a ton of wheat, but I would definitely miss the periodic pizza or my go-to pasta (although Trader Joes makes a great rice one). For me, all the weird things gluten is in, like medicine, is the hardest to figure out. And the duplicate cooking it will require for my family will be really annoying for awhile (I never cooked my kids separate meals when they were young, and I really am not looking forward to starting now!). And I do love to bake............ meh. I'm not having a melt-down, but I can't say it wouldn't suck.

A couple of things you should know.......asthma is often another disease that has it's roots in Celiac Disease. 

Open Original Shared Link   You may want to have your son tested.  I have asthmatics in my family but they are not interested in knowing if they have Celiac.

 

You should not make duplicate meals....ever.  It's not a good idea for a Celiac to be using gluten ingredients to make food because the odds of contaminating yourself is high.

Not to mention it is too much work and it will not kill anyone to eat gluten free at the family table.  They can always eat gluten outside the home, at school or work.

 

Baking is not hard to do gluten free but there is a little learning curve.  Gluten free baked goods taste every bit as good as their wheat counterparts and if someone doesn't think so, they aren't doing it right.  Really, going gluten-free for the rest of your life is not going to mean feeling deprived, once you get past the learning curve.  And once you are gluten-free and your health improves, you won't be so worried about gluten in meds because you won't need any.      Besides, the prevalence of gluten in meds is overblown.  It is not as bad as some would think.

 

Welcome to our world and a future with much better health!