New And Feeling Awful

[faiths13]

Hi,
I am new to being gluten free. I have had a myriad of symptoms for a long time, but for some reason the past year has been severe. I have severe brand fog, dizziness, no focus, bad memory, chronic constipation, severe bloating, gas, anxiety, sudden rage, my voice has gotten raspy, I'm overly emotional/moody. I have been suffering and looking for an answer and finally found out I have a thyroid problem and an adrenal gland probleproblem I'm lactose intolerant, have low blood pressure, low blood sugar and vitamin d deficient. I've been taking supplements from the dr and got off dairy, and still no improvement. Finally in my research I saw all these things can be traced back to having a problem with gluten. So I decided to take myself off gluten out of desperation to feel better. I stopped eating gluten Tuesday, but then Saturday night ate something I was told was glutamine free and it turns out it wasn't. So yesterday I felt awfully and today I feel worse. I don't know what to do. I'm a wreck. My head is in a cloud. I don't know if I should try to bother getting tested or not. I have 4 kids. I am just scared because I feel so sick I can't function and frankly I just don't trust dodoctors much. I've been seeing someone who does kinesiology to get to where I am now. Thank you.

[Celiacandme]

I'm sorry you are feeling so terribly. You have to be eating gluten for accurate testing results. If I were you, since you just decided to go gluten free, I would go now and get tested for celiac disease. For me, I'd want to know for sure, especially with having four children. If you have celiac disease they'll need to be tested and watch out for it as well in the future. Your doctor should run the full celiac panel. An easy blood test that could start to give you more answers. Typically after that you would have an endoscopy if those results are positive. But call now - see if you can get your blood drawn asap before you truly start and get used to the gluten free diet. Welcome to the board. Hope you are on the road to feeling better very soon. Keep us posted.

[faiths13]

Thank you

[murphy203]

Yes to what celiacandme said --get tested, both for you and your children, because this condition is passed along to our kids (and parents, LOL).

[mamaw]

Hello & Welcome.. Please know that you must be consuming at least two slices of bread a day for about three weeks or longer to have an accurate blood test... You haven't stopped gluten for only a few days but get back to eating it so your test comes back with accurate info...It may be hard to do but I recommend biting the bullet now & not be feeling in limbo forever...

[nvsmom]

Welcome to the board.  

 

Ditto the others.  It is probably a good idea to get tested for celiac disease before you go gluten-free.  Most doctor require 8-12 weeks of 1-2 slices of bread per day prior to blood testing being done.  If you go gluten-free now, you'll have to reintroduce it for a few months, and go back to feeling poorly... Hard to do for many celiacs.

 

Ask your doctor for these tests:

• tTG IgA and tTG IgG (tissue transglutaminase) - most common tests
• DGP IgA and DGP IgG (deaminated gliadin peptides) - newer tests that are good at detecting celiac disease in early cases or in children
• EMA IgA (endomysial antibodies) - similar to the tTG IgA but indicates more advance disease
• total serum IgA - a control test
• AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests largely replaced by the DGP tests
• endscopic biopsy - ensure 6 or more samples are taken, gluten challenge of only 2-4 weeks needed

I really hope you will get tested.  Your symptoms sound so very much like mine.  I have hypothyroidism, another AI disease, some minor adrenal and pituitary issues  (seem to be resolving), low BP, and hypoglycemia.  I too have a changed voice, fatigue and some crankiness, as well as C my entire life, and painful bloating.... Most of it has improved after going gluten-free and getting my thyroid treated.    Some of those issues, as well as some other unmentioned symptoms, took a long time to improve - over a year.  Going gluten-free is not a quick fix.  Some symptoms like bloating will improve fairly quickly but others take a long long time.  If you can get tested sooner rather than later, you can get started healing faster.

 

Best wishes.

[faiths13]

Before last week, I was eating gluten like a glutton, lol. I was addicted to bread, crackers, desserts etc. I would eat it constantly. But after the past two days I can barely function. I don't see how I can go back to eating it. I can barely take care of my kids. It has been a nightmare. I want more than anything to feel better!

[mamaw]

Please get tested , you are in the final run you just need one more push ... Don't give up now....focus only on the daily things that must be done, Care for the kids, worry about nothing else , it will all be waiting for you after you get the testing done...Take all other life burden's & put them on the back burner. You are going to get healthy then you can catch up....

You are not only doing this for yourself but for the kids!

[nvsmom]

Before last week, I was eating gluten like a glutton, lol. I was addicted to bread, crackers, desserts etc. I would eat it constantly. But after the past two days I can barely function. I don't see how I can go back to eating it. I can barely take care of my kids. It has been a nightmare. I want more than anything to feel better!

 

That's all the more reason to get tested soon. Imagine having to go back on gluten for 3 months just top be tested (if you go gluten-free for a few more weeks).  Ugh!

 

It is pretty normal to be shocked by how bad gluten can make you feel after going gluten-free for a while.  My theory is that after eating gluten for a while, your body gets used to it and it becomes your new normal.  Once you start to feel better, the symptoms of being glutened become very apparent!  

 

Mamaw is right.  Get tested for your kids too.  If you do have celiac disease, then you need to know that your kids are at a much higher risk of getting celiac disease - somewhere between 1 in 22 up to 1 in 10 compared to 1 in 133 for the typical person.  If you have celiac disease, they will need to be tested every couple of years, or as soon as they show symptoms, for their entire life.  You need that knowledge.

 

I really like this report for the info on testing: Open Original Shared Link

This too: Open Original Shared Link

 

Best wishes.

[Jays911]

Get tested. It was the best thing (other than my marriage and my conversion to Catholicism) I ever did. If you are celiac or gluten intolerant, your life will change. Major league blessings.