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Hi,

I am new here and very suspicious that my son and I have Celiac. My fatigue is constant and I always attributed it to my horrible case of mono when I was 19 that I never seemed to completely recover from. I have not changed my own diet yet but have changed my son's. My husband is constantly calling me lazy. My brain fog also elicits negative comments from him. Can anyone relate to this scenario and do you have any advice?

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Hi,

I am new here and very suspicious that my son and I have Celiac. My fatigue is constant and I always attributed it to my horrible case of mono when I was 19 that I never seemed to completely recover from. I have not changed my own diet yet but have changed my son's. My husband is constantly calling me lazy. My brain fog also elicits negative comments from him. Can anyone relate to this scenario and do you have any advice?

There are a lot of us who can certainly relate to what you are going through. Have you had any celiac screening yet? You have to be eating gluten for those tests to have any chance of being accurate and even on a full gluten diet there is still a risk of a false negative.

Unless someone has experienced it it's hard to understand just how overwhelming the fatigue can be. The brain fog can also be really hard to deal with, especially when we are around people who are less than sympathetic.

If you are going to be tested keep eating gluten, if not then go ahead and give the diet a go. When you first start out it is best to go with whole unprocessed foods for a bit. Things like veggies, fruits, meats that are fresh, potatoes, rice and wild rice, unshelled nuts and more are all naturally gluten free.

Something that may also help with the brain fog and fatigue would be sublingual B12 supplements. Make sure they are gluten free and the sublinguals. They dissolve under the tongue and bypass our damaged gut.

Feel free to ask any questions you need to.

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I had extreme fatigue too, it was awful. It drove me crazy because I had a list of things I always wanted to do, I was mentally motivated, but I just physically couldn't do nearly what I wanted.

As ravenwoodglass said, you can either stay on gluten and be tested, or switch your diet and see if it helps. Since you haven't changed your diet at all, why not call and get tested now before you decide to try it on your own.

b12 helped me too, along with vitamin D. You can have your doctor check you for any deficiencies, along with anemia, too, as many times, one or some of these thing accompany celiac.

Welcome to the site :)

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My son had bloodwork done yesterday. He's only been gluten free for a few days so I'm hoping it doesn't skew the results. I was curious what his results would be before I contacted my doctor about myself. I probably should just go ahead and call anyway seeing as many of the symptoms and related illnesses run in my family and I wouldn't be surprised if the majority of them had Celiac Disease. I have already seen some improvements in my son's diapers. It will be much easier to control my son's diet than my own. My husband and I are way into craft brewed beers and belgian beers. I know there are gluten free beers out there but it is more of the social aspect that would be hard for me. It's kind of a hobby for most of my friends. Well, I will definitely get the sublingual B12 and be more conscious of taking my iron as I have always been borderline anemic. I think I will get myself tested but only because I think my family would be more likely to consider going gluten free if I had a real diagnosis. Thanks.

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My son had bloodwork done yesterday. He's only been gluten free for a few days so I'm hoping it doesn't skew the results. I was curious what his results would be before I contacted my doctor about myself. I probably should just go ahead and call anyway seeing as many of the symptoms and related illnesses run in my family and I wouldn't be surprised if the majority of them had Celiac Disease. I have already seen some improvements in my son's diapers. It will be much easier to control my son's diet than my own. My husband and I are way into craft brewed beers and belgian beers. I know there are gluten free beers out there but it is more of the social aspect that would be hard for me. It's kind of a hobby for most of my friends. Well, I will definitely get the sublingual B12 and be more conscious of taking my iron as I have always been borderline anemic. I think I will get myself tested but only because I think my family would be more likely to consider going gluten free if I had a real diagnosis. Thanks.

Just be aware that there is an even higher risk of a false negative with little ones than there is with adults, and the NIH estimates that 30% of adults will have a false negative with the blood work. When positive results are there the diagnosis is pretty certain.

If you are always borderline anemic that is another red flag for celiac. Although you may be able to supplement your levels to within fairly normal amounts if your body is under an attack from antibodies to gluten you are risking some serious effects from ignoring it. Some of those effects can be irreversable, lymphoma is one, cancers of the intestine is another, autoimmune destruction of the thyroid, gallbladder or even your brain can occur. Please don't forgo testing because you are afraid of the lifestyle changes that would be required if the results are positive. Better to join your freinds and drink a gluten free beer than to have them pushing you in a wheelchair or visiting your hospital room to keep you company during chemo.

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Just be aware that there is an even higher risk of a false negative with little ones than there is with adults, and the NIH estimates that 30% of adults will have a false negative with the blood work. When positive results are there the diagnosis is pretty certain.

If you are always borderline anemic that is another red flag for celiac. Although you may be able to supplement your levels to within fairly normal amounts if your body is under an attack from antibodies to gluten you are risking some serious effects from ignoring it. Some of those effects can be irreversable, lymphoma is one, cancers of the intestine is another, autoimmune destruction of the thyroid, gallbladder or even your brain can occur. Please don't forgo testing because you are afraid of the lifestyle changes that would be required if the results are positive. Better to join your freinds and drink a gluten free beer than to have them pushing you in a wheelchair or visiting your hospital room to keep you company during chemo.

Yes, you are right. Thanks.

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Yes, you are right. Thanks.

I hope I didn't come across to harshly, if I did I apologize. I would give anything to have been diagnosed and have my kids diagnosed when we were all still young, we missed out on so much. I don't show up in bloodwork and it delayed my diagnosis by so many years that irreparible damage was done, including to my marriage.

You could introduce your freinds to some of the gluten free beers also. There is a brand called 'Greens' that is very much like a European heavy beer. I like the light stuff, I drank Mich Lite for years so it was a bit strong in flavor for me but many people really like it. Maybe even have some of those social hours be an introduction into the world of wine or hard ciders.

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Hi,

When you go to the doctor it wouldn't be bad idea to ask for thyroid level tests (T3, T4, TSH) and thyroid antibodies tests also. Celiacs sometimes get Hashimoto's Thyroiditis and the low thyroid symptoms can cause tiredness and brain fog too. I have the same kind of symptoms, tiredness, and brain fog etc, along with sore joints etc.. It's really hard to get things done when I feel like that, which is most of the time this year. It is also hard to keep a positive attitude towards things when you feel blah all the time. I have some thyroid issues and am pretty sure that's whats dragging me down.

The Green's beer is pretty good, but a little pricey. It's a Belgian brand. It's $6 a bottle at one local store. At least I don't smoke, whew! That would be bad. LOL Kidding Raven!

There's also New Grist and Redbridge.

http://www.beverageworld.com/content/view/33173/165/

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I hope I didn't come across to harshly, if I did I apologize. I would give anything to have been diagnosed and have my kids diagnosed when we were all still young, we missed out on so much. I don't show up in bloodwork and it delayed my diagnosis by so many years that irreparible damage was done, including to my marriage.

You could introduce your freinds to some of the gluten free beers also. There is a brand called 'Greens' that is very much like a European heavy beer. I like the light stuff, I drank Mich Lite for years so it was a bit strong in flavor for me but many people really like it. Maybe even have some of those social hours be an introduction into the world of wine or hard ciders.

You did not come across harshly. I understand the benefits of being diagnosed early. It certainly does put a strain on a marriage. My whole family is hoping that it's not Celiac. I am hoping it is because at least I can finally be free from all the symptoms in my son and myself. I will have to come to terms with the lifestyle changes but, if it means no more fatigue, IBS, joint pain, or brain fog it will be worth it. My 2yo son has had diarrhea 3x a day for months. I will be happy if I can just stop searching for the reason.

Thanks for the lead on the beer. :) I thought gluten-free beer would be hard to find but I followed up yesterday and found out that it is at my local liquor store.

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You did not come across harshly. I understand the benefits of being diagnosed early. It certainly does put a strain on a marriage. My whole family is hoping that it's not Celiac. I am hoping it is because at least I can finally be free from all the symptoms in my son and myself. I will have to come to terms with the lifestyle changes but, if it means no more fatigue, IBS, joint pain, or brain fog it will be worth it. My 2yo son has had diarrhea 3x a day for months. I will be happy if I can just stop searching for the reason.

Thanks for the lead on the beer. :) I thought gluten-free beer would be hard to find but I followed up yesterday and found out that it is at my local liquor store.

I do understand the 'hoping it is' line of thought. Do be sure to try the diet after all testing is done, even if the test results are negative. It could make an incredible difference in your quality of life. Unfortunately testing can show false negatives all too often. It can be hard to adjust at first but if gluten is an issue for you and your son it will be well worth the effort. I hope you get some answers and are feeling better soon.

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I feel for you. The brain fogginess and exhaustion are debilitating. I am gluten free for two years, but still suffer from this.

I have also found that sublingual B12's (they have to be sublinguals; the ones that you swallow into your stomach will not work as it doesn't necessarily go into your bloodstream that way). You can take as much B12 as you want, you can't ever take too much. Your urine will only turn greenish blue if you take too much for your body to absorb. I take tons at first, and then less when I start feeling better. they are expensive, but the only thing that gets me back to normal life.

good luck

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My fatigue is constant and I always attributed it to my horrible case of mono when I was 19 that I never seemed to completely recover from. calling me lazy. My brain fog also elicits negative comments from him. Can anyone relate to this scenario and do you have any advice?

Given your "key" symptoms are brain fog and fatigue I would approach a "good" endocrinoligst and check out thyroid issues first and see if that is in the optimal. It is strange thyroid and gluten issues seem associated..

(I am on both domains.. thyoid and gluten sensitive)

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Hi,

When you go to the doctor it wouldn't be bad idea to ask for thyroid level tests (T3, T4, TSH) and thyroid antibodies tests also. Celiacs sometimes get Hashimoto's Thyroiditis and the low thyroid symptoms can cause tiredness and brain fog too. I have the same kind of symptoms, tiredness, and brain fog etc, along with sore joints etc.. It's really hard to get things done when I feel like that, which is most of the time this year. It is also hard to keep a positive attitude towards things when you feel blah all the time. I have some thyroid issues and am pretty sure that's whats dragging me down.

The Green's beer is pretty good, but a little pricey. It's a Belgian brand. It's $6 a bottle at one local store. At least I don't smoke, whew! That would be bad. LOL Kidding Raven!

There's also New Grist and Redbridge.

http://www.beverageworld.com/content/view/33173/165/

Another really great gluten free beer is Messagare from Quebec. This is $2.80 Canadian a bottle, but you can only buy in a six pack right now. Non-celiacs even like this beer!

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Given your "key" symptoms are brain fog and fatigue I would approach a "good" endocrinoligst and check out thyroid issues first and see if that is in the optimal. It is strange thyroid and gluten issues seem associated..

(I am on both domains.. thyoid and gluten sensitive)

Due to the depression I've been treated for on and off over the years, I've been tested for thyroid issues. Everything seems fine. I was also concerned about this since my sister has thyroid issues. Brain fog and fatigue are only a couple of my symptoms. I also have frequent diarrhea, bloated stomach, joint pain, and muscle aches. I'm also starting to think all those weird cases of "poison ivy in the bloodstream" may have been DH.

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Another really great gluten free beer is Messagare from Quebec. This is $2.80 Canadian a bottle, but you can only buy in a six pack right now. Non-celiacs even like this beer!

I really appreciate all the leads on good beer! :D

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I can relate to the brain fog! One time it got so bad that I had to have someone repeat a question 4 times before I could finally answer it! Then I forgot all about it two seconds later :lol:

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I had the brain-fog and laziness for a long time too, before the diagnosis. It made me hate myself and I couldn't understand why I had no energy, etc. The first time I was tested for celiac, I had a false negative too.

I took B12 by injection for years before finally getting REALLY sick with the celiac disease. In the meantime, it had helped a lot. The only thing medically wrong with me in all the blood tests was a low b12 and it took a long time to find a doctor who really wanted to find out WHY the b12 was so incredibly low. I started getting one a month but by the time i was finally diagnosed I was giving myself injections daily of the stuff. (and I never managed to get enough in my system to change the color of my urine!) . They tested my thyroid all the time, it was kind of funny, but it was never irregular.

Finally, I lost 50 lbs, was walking into walls, dropping things, and had serious aphasia and memory problems too- NOT good for a college prof - and I started to have a lot more abnormal test results (like liver, kidneys, etc). I had joint pain and muscle aches too. I would fall asleep at stop signs driving home - and that was with daily b12 injections!

Don't let anyone - including yourself - tell you you're lazy. Especially if this a change from the way you used to feel, you *need* to find out why. Also, be kind to yourself, as much as you can. Some days you just can't get things done and you need to rest. Do what you can, when you can.

Good luck!

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Brain fog? Exhaustion? I'm managing - I've not missed a day of work and am quite competent at what I do. It makes me wonder what I could have accomplished without celiac disease. It's hard not to be angry about it...

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