New And Confused

[sbloom]

As I've been perusing through a lot of message boards, I see there are a lot of people who also have been diagnosed with Celiac Disease who didn't have a lot of bowel problems. I had my first baby a few years ago and 6 months later was incredibly tired and didn't know why. The doctor did a blood test which came back positive so I had a biopsy done that was "inconclusive". I tried gluten-free for a few months and didn't feel any better so for the last few years I've just eaten as normal. I just had my second baby and they wanted to check it again and have them same type of exhaustion but my argument is I have 2 kids under the age of 2, that will do it to you! I still have no bowel problems or symptoms it seems, however they re-scoped me and my biopsy came back positive this time. I had one GI doctor tell me not to worry about eating gluten-free until it got bad enough that I was having bowel problems because without them, I won't have the malnourishment, etc. He thought I was just in the early stages of Celiac. The most recent doctor told me it doesn't matter, I'm still causing damage. I don't know what opinion to follow, however the first one I want to believe because I'm having a hard time giving up gluten I am chronically tired and if it will give me more energy, as a mother of two young active boys I'll gladly make the necessary adjustments for that to happen.

Did anyone have the same thing where their only symptom was being chronically tired? How long did it take before you felt this change on the gluten-free diet? I still feel like I'm in the mourning/denial stage because I just can't imagine the rest of my life without donuts and cinnamon rolls. It's embarrassing, but food is such a big part of my life. If we're having a party, all I want to know is what food is going to be there! I know I'll need to change the way I view food before this can work for me. I feel like this disease is my Achilles heel. Any tips?

[GlutenFreeManna]

As I've been perusing through a lot of message boards, I see there are a lot of people who also have been diagnosed with Celiac Disease who didn't have a lot of bowel problems. I had my first baby a few years ago and 6 months later was incredibly tired and didn't know why. The doctor did a blood test which came back positive so I had a biopsy done that was "inconclusive". I tried gluten-free for a few months and didn't feel any better so for the last few years I've just eaten as normal. I just had my second baby and they wanted to check it again and have them same type of exhaustion but my argument is I have 2 kids under the age of 2, that will do it to you! I still have no bowel problems or symptoms it seems, however they re-scoped me and my biopsy came back positive this time. I had one GI doctor tell me not to worry about eating gluten-free until it got bad enough that I was having bowel problems because without them, I won't have the malnourishment, etc. He thought I was just in the early stages of Celiac. The most recent doctor told me it doesn't matter, I'm still causing damage. I don't know what opinion to follow, however the first one I want to believe because I'm having a hard time giving up gluten I am chronically tired and if it will give me more energy, as a mother of two young active boys I'll gladly make the necessary adjustments for that to happen.

Did anyone have the same thing where their only symptom was being chronically tired? How long did it take before you felt this change on the gluten-free diet? I still feel like I'm in the mourning/denial stage because I just can't imagine the rest of my life without donuts and cinnamon rolls. It's embarrassing, but food is such a big part of my life. If we're having a party, all I want to know is what food is going to be there! I know I'll need to change the way I view food before this can work for me. I feel like this disease is my Achilles heel. Any tips?

The first doctor you saw ought to have his medical license revoked! That's awful that he told you that. That's like saying to someone with an operable tumor, don't worry about the cancer until it has metastcized to your entire body and you are nearly dead! As long as you are eating gltuen your body is making antibodies. The gluten can attack any of your organs--your brain, your liver, your thyroid, etc not just the intestines. The fact that you had a positive biopsy means you DO have damage to your intestines and are likely having malabsoption. This will make you tired. Gluten is also likely attacking your neuological system--your brain, your nerves, etc which will disrupt your sleep.

I not only had extreme fatigue prediagnosis but I got so bad I was bedbound with nerve pain and muscle spasms. My hands shook, my hair was falling out. I started having unexplained seizures. Memory issues. I could not longer read and retain information. I was forced to drop out of grad school and quit working. There are several others on this board with stories similar to mine. I did not have GI symptoms until after I went gluten free, but I have no doubt I was malnourished from vitamin malabsorption. Now I get both my neurological symtpoms and GI symtpoms if I get a little bit of cc (cross-contamination). As long as I am gluten free I have energy and feel good and have no symptoms.

Thank your lucky stars that your celiac was caught early enough that your are not half dead and disabled from it. Be aware that if you continue to eat gluten until you "feel" like you are really, really sick your chances for developing additional auotimmune diseases (hashimotos, RA, lupus, etc) and/or cancer increase dramatically. Gluten is poison to your body. You must eliminate it--not a little bit or not mostly but 100%. If you did not feel better the first time you went gltuen free it may be because your were still getting a good amount of hidden gluten. This board can help you figure out those sources of hidden gluten. It is also possible that your need to add vitamins to your gluten free diet. Your doctor should test your vitamin levels--especially things like Iron, vitamin D, and Vitamin B.

PS: I have discovered a great brand of gluten free donuts made by this company: Open Original Shared Link

I can't even tell they are gluten free. Of course I maybe forgot what the real ones taste like sinc ei did not find these until I had been a year gluten free. People on this board also make donuts and cinnimon rolls. I'm sure they can help you come up with a good recipe with some practice.

[cyberprof]

As I've been perusing through a lot of message boards, I see there are a lot of people who also have been diagnosed with Celiac Disease who didn't have a lot of bowel problems. I had my first baby a few years ago and 6 months later was incredibly tired and didn't know why. The doctor did a blood test which came back positive so I had a biopsy done that was "inconclusive". I tried gluten-free for a few months and didn't feel any better so for the last few years I've just eaten as normal. I just had my second baby and they wanted to check it again and have them same type of exhaustion but my argument is I have 2 kids under the age of 2, that will do it to you! I still have no bowel problems or symptoms it seems, however they re-scoped me and my biopsy came back positive this time. I had one GI doctor tell me not to worry about eating gluten-free until it got bad enough that I was having bowel problems because without them, I won't have the malnourishment, etc. He thought I was just in the early stages of Celiac. The most recent doctor told me it doesn't matter, I'm still causing damage. I don't know what opinion to follow, however the first one I want to believe because I'm having a hard time giving up gluten I am chronically tired and if it will give me more energy, as a mother of two young active boys I'll gladly make the necessary adjustments for that to happen.

Did anyone have the same thing where their only symptom was being chronically tired? How long did it take before you felt this change on the gluten-free diet? I still feel like I'm in the mourning/denial stage because I just can't imagine the rest of my life without donuts and cinnamon rolls. It's embarrassing, but food is such a big part of my life. If we're having a party, all I want to know is what food is going to be there! I know I'll need to change the way I view food before this can work for me. I feel like this disease is my Achilles heel. Any tips?

Sbloom, welcome. It looks like you have a good doctor (the second one at least). You're right that most moms with 2 kids under age 2 (been there, done that) will be tired. But you're a poster child for someone who really needed to go gluten-free after the first blood test was positive (blood tests are very rarely false positive) and now you've go the gut damage to go with the immune response (which is what the blood test measured).

I know it's hard to imagine, but you might find a lot of other symptoms clear up when you go gluten-free that you didn't know were related.

Food is a big part of social life and it will be hard for a while...like grieving a death. But I was like you...anticipating a party for days, imagining the wonderful treats. It also points to gluten addiction, which is how I was. Gluten can be very addicting because the protein works with the neurotransmitters somehow. (I read the studies but don't have them handy now.) I was really addicted to what was making me sick.

I'm sure you'll find others on here who had tiredness as their only (visible) symptom.

I used to wake up and feel like I'd been run over by a truck. I thought I was just getting old. That feeling disappeared after one week gluten-free. I hope you have the same result.

[adab8ca]

YIKES. I think it is irresponsible for the Dr to say you have a mild case of celiac and don't worry until you get bowel problems.

He need me to send him a NEWS flash. I had no bowel symptoms. My symptoms were excruciating nerve pain in my feet and legs and crushing suicidal anxiety and depression. So much pain. SO much sadness. My feet couldn't touch the bed, the pain wa so bad. Insomnia where I did not sleep for days and days and started hallucinating. Such mental problem. The neurologist I saw ran a bunch of autoimmune antibodies to rule them out (after I was tested for MS, cancer, a whole bunch of stuff) and my celiac panel came back very high. My biopsy also showed total villous atrophy.

Be thankful your symptoms are relatively mild and stop eating gluten right now. The damage will only get worse. It can be irreversible. I am not trying to scare you, please understand this is from total concern if I can stop anyone from suffering like I did, I want to.If you can, run don't walk to see a dietician that specializes in celiac disease/

Your babies need you. You should also get them tested (although the tests can be inconclusive in the very young). At least armed with this info, should anything not seem right with the boys, you have a good place to start.

Ask lots of questions, you have come to a good place and I really wish you all the best. (FWIW I am almost 7 months gluten-free and am getting my life back)

[mushroom]

Hello and welcome to the board. Many people are "silent" celiacs, i.e., they do not have any symptoms at all that they are aware of. You do have the tiredness which is apparently what prompted the testing after each of your children was born. Maybe your doctor is aware that childbirth is one of the triggers for celiac disease. Your would have been born with at least one predisposing gene but it takes a trigger to activate the disease, physical or emotional stress or trauma.

The fact that you have no gastric symptoms does not indicate that no harm is being done to you. Celiac disease is sneaky and can attack the body in many different ways. In my case I ended up with psoriatic arthritis. Others end up with diabetes, gluten ataxia, migraines, lupus, RA, thyroid disease, any other of a number of autoimmune diseases triggered by the celiac. These can take many years to develop and are not always accompanied by warning signals - just one day you have it. I am sure you don't want any of these things, nor to increase your risk of colon cancer or lymphoma. So I agree with Doctor #2 that you should eliminate all gluten immediately.

Not to say that this is an easy adjustment to make - it is not. But for the sake of your health, and thinking of that strength and energy you will regain, it must happen. You will need to do a lot of reading to learn where gluten hides, because it is sometimes difficult to find. You will have to discuss with your partner whether you alone will eat gluten free or the whole house will be gluten free. Things to consider: celiac disease is hereditary and there is a chance that your children will also develop it; cross-contamination is a serious problem in a kitchen where there is both gluten and non-gluten food, and since you don't have any gastro symptoms it will be difficult to know if you are being cc'd, adding to which you have small children who will not understand about things like crumbs and keeping them away from you. If you want to read someone's experience read these three thread by shayre:

Am I Super Sensitive? I Am Not Well After A Long Time gluten-free

Can Someone Give My Hubby Advice On Live gluten-free With Me

How Do I De-Gluten My Kitchen

My advice if you can get your husband to agree is to take your household gluten free. If your children don't seem to have any problems later in life they can always try eating gluten and see if it is a problem for them, and you could all have the genetic testing done also to see if they have the same genes as you do.

I wish you a healthy journey to gluten free.