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Am I Going Nuts !

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Hi folks, new on the forum but have been diagnosed with celiac disease, biopsy & blood tests. I have been gluten-free for about a week now and feel a very slight improvement although my consultant told me I have quite severe damage to stomach lining and surrounding areas...since going gluten free I have been experiencing some quite weird symptoms, forgetfulness, shaking right hand, cramp, sore neck & with helping my 10 yr old to do his school homework an inability to even do simple arithmetic....this was the worst feeling as I am very good at Maths.

Has anyone came across this before.



Aye Yours.



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I'm just guessing here but if you had severe damage to the villi in your small bowel, then your physical condition is possibly still deteriorating because one week is not enough time to heal significantly and start restoring all the nutrients your body is missing. I had the brain fog and muscle and joint aches and pains for week and weeks and weeks.

If these conditions continue to get worse, though, I'd see your doctor.



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:D hi big scott and welcome-----i too now realize i had symtoms such as yours--at the time i didnt relate it to celiacs--i read things in here and i think--wow, that was me---after going gluten-free, for months i had terrbile hip pain at night--it would even become a part of my dreams--whatever i was dreaming about, i would be in tears from the hip pain and i would wake up in tears hurting so bad--from what i read in here, it sounds normal for recovering celiacs to go through these little quirks---now whenever i forget something i tell my man its the celiacs fault ;) there has to be some pluses to having this disease ;) i promise, in time you will start feeling better :rolleyes:

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Thanks Deb,

I'm still trying to take all of this in...up until 2 years ago I was the fittest guy on the planet and a soccer coach, although I coach twice weekly it takes an awful lot out of me and at times trying to explain to others what it feels like also takes it out of me...It just got to the stage I kept it to myself for fear of sounding like a whinge who was always complaining.

I am glad now that I can focus and look forward to improve things and it has helped reading other peoples experiences.

Thanks a lot,

Aye Yours

BS ;)


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    • Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old.  Life is going to get harder for her.  Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.   In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years.  His parents were perplexed.  Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease.  So, he ate pizza.  He was too embarrassed to tell his parents.   My daughter does not have celiac disease.  She was first tested two years ago.  Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year.  It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.   It certainly sounds like your younger children should be screened.   I wish you both well!      
    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
    • I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  
    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
    • I have Common variable immune deficiency (CVID) which has impaired my IgA and my IgG. I have infusions monthly for immunoglobulins. I had a blood test for celiac which showed negative however, I have nearly every celiac symptom. Everything else I have been tested for and believe me I have been tested. Kidneys, Gallbladder, emptying studies, and on and on have all been o.k.    I did go partially gluten free once a long while ago and I did feel better. I wonder if I just go gluten free if it would make a big difference. 
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