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Newly Diagnosed - Just A Few Questions


HumanDecency

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HumanDecency Contributor

Sorry in advance if I am not posting properly. My thinking is a bit foggy and I was a bit too anxious to properly read the directions for the forum.

 

Anyway, here goes.

 

I have been having stomach issues, fatigue and bloating for a while. So a few weeks ago I had an endo and my doctor discovered celiac antibodies. I kind of figured this was going to be the case so I was a bit proactive and went gluten free right after my appointment. He called with the results a week later and confirmed it and told me to go gluten free from now on. I am now going into my third week.

 

Last night was pretty rough. I hate a lot of fatigue, nausea and numb limbs. My face tingled a bit. This has happened in the past. I go to the urgent care and they just shake their head and send me home with a lighter wallet. I've discussed this with my specialist but he hasn't stated anything concrete. I have an appointment on the 23rd - so hopefully that will be covered then.

 

Also, my hunger has been insatiable.

 

But the first few days of the gluten fast I actually felt better. Now it feels like I am relapsing a bit. I have been pretty careful to avoid cross contamination and I am checking labels like a mad man. Is this normal?

 

Thanks,

Jesse


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mamaw Community Regular

Yes,  people  go through  all kinds  of issues  while  the body  detoxes  itself....Plus  you  may  go through  pain,  sadness,  anger, denial, grieving & so  on.. It's  all normal &  it  will go  away....You will also learn  to  hear what  your body is  saying through this process...Down the  road  you may find  other things  that  cause you problems   that  in  your  wildness  dreams you never  realized...

I  surprised  your  doctor  did  not  want ypou to get  an endo  with at least  three  biospies.......

It  is  great  that you  are  a label  reader,  some  companies  are  known to change  ingredients  like  we  change underwear!!!!!

 

Try to  stick  to  a  very  clean  eating  pattern for the next  few  months ie:  stay  away  from  alot of processed  foods,  dining out,  &  fattening  snacks....this  will give  your  body  time to  make the  changes it needs too &  you  will heal  the intestinal tract  .....

You  will have  ups  & downs  &  possubly  mishaps  as well. Use  these  times  as  a  leraning  experience....

Also  if you continue  to feel not so good  try  removing  dairy  for  a few  months  too....

 

Be  sure  to  check  your   kitchen  for  items  that  are  scratched,  plastic   utensils, teflon,  cutting  boards,colander, toaster, blender  &  such  for  any  CC.... 

Have  pets  check  the pet  food  for  wheat  esp.  if  you have  small children... I know that may sound  strange  but  small kids crawl on the floor  the dog  licks  their  faces & body  , you pick the kids up  &  hug &  kiss  them ,  gluten  attack!!!!

 

blessings

alliesees Newbie

I agree with everything in the previous reply.  The only thing I would suggest additionally is that you choose a menu which only includes a few options for breakfast, lunch and dinner, stock those in your home, and eat them for the next week, or two.  I found that in the beginning, having to think about food and continually check into possible contamination issues created additional unhappiness in me.  Also, in regards to you home, making sure you have a dedicated cutting board, a pot/pan and utensils (no wooden spoons) and clean condiments will also ensure that your hard earned efforts of staying gluten free pay off.

 

Good luck!

HumanDecency Contributor

Thanks, everyone. It's greatly appreciated it. This has been rough. I think the worst part is the uncertainty. It's a new feeling which I have never experienced. The internet definitely helps and hurts. I've been reading the good stories and the bad and not sure where I will land.

 

I'm going to take the advice about the pots and pans and utensils and will also browse around for a simple menu. 

 

I read an interesting quote last night from a guy who said he thought his life was over when he got his diagnosis but that it was really just the first day of a wonderful experience. So I'm trying to stay optimistic.

 

Thanks to all of you.

mushroom Proficient

No, life is definitely not over with a celiac diagnosis.  It is just the first day of a new, better life :D  (and I'm not just being Pollyanna).

HumanDecency Contributor

No, life is definitely not over with a celiac diagnosis.  It is just the first day of a new, better life :D  (and I'm not just being Pollyanna).

 

I see that you have a lot of intolerance's in your profile. What kind of meals do you eat?

mushroom Proficient

I see that you have a lot of intolerance's in your profile. What kind of meals do you eat?

 

Looking at my food it doesn't appear any different to anyone else's :D -- just no one else can prepare it!!!  Actually, there are some places I can go to eat out :)  but I always take my Lectin Lock with me because, like GottaSki, lectins are my major problem -- worse than the gluten thingy :lol:


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    • trents
      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
    • Xravith
      My genetic test results have arrived - I’m homozygous for DQB1*02, meaning I have HLA-DQ2. I’ve read that this is one of the genes most strongly associated with celiac disease, and my symptoms are very clear. I’m relieved that the results finally arrived, as I was getting quite worried since my symptoms have been getting worse. Next step, blood test. What do these results imply? What should I tell my family? I’m concerned that this genetic predisposition might also affect other family members.
    • Roses8721
      Two months. In extreme situations like this where it’s clearly a smoking gun? I’m in LA so went to a very big hospital for pcp and gi and nutritionist 
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