I Am New Here

[luvkin]

HI,

I am new here and have a question.

I was told by a doctor years ago to stop eating gluten, so I cut back on gluten and my "arthritis" went away. I went many years just cutting back. Then I was seeing a psychotherapist for anxiety and panic attacks. I told her about my gluten allergy, she said to get off of it completely. I did not know that it was causing my depression, mood swings, anxiety, panic attacks, brain fog, IBS, headaches, and feeling sick all the time. I have been off of it for over 6 months now. I feel great now! I spoke to my doctor (different from the first) about being tested for it. She told me that it is very invasive and not needed. If I feel so much better by not eating gluten, then don

[Jestgar]

My question is, if a person feels so much better not eating the gluten why does a person need to be diagnosed to continue to not eat gluten? From what I have found out about gluten intolerance and Celiac disease is that the doctors in the US have not caught up with the science yet. If we all lived in Europe the doctors there would just tells us not to eat it. The US doctor

[dlp252]

Hello and welcome! You're right, even my doctor told me that diet is a valid indicator.

[Guest Villanfam]

Welcome

As far as I know you cannot be allergic to gluten. You can however def. be allergic to wheat but that is not considered to be celiac disease unless you are both allergic to wheat and intolerant to gluten (celiac disease) "depression, mood swings, anxiety, panic attacks, brain fog, IBS, headaches, and feeling sick all the time" are definitely symptoms of celiac disease. Those symptoms are termed "neurological celiac disease" check out this thread: Open Original Shared Link

It's kind of a long thread but it's worth reading.

I wouldn't hesitate being 100% gluten-free or having your kids be 100% gluten-free either. You don't need a Dr.

[Daxin]

Just to echo what has already been said, If you feel better, than stay off gluten. My doctor told me that should be enough of a signal in and of itself to show me that I was intolerant at the very least!

I was surprised as well at how many other "symptoms" cleared up after going gluten free. (I had bad heart palps)

[Nantzie]

Wow! Smart doctor! That's great to have that support.

Since you had been gluten-limited and then gluten free for so long, the testing almost definitely would have come back negative.

I think there is one big reason to go for a diagnosis or at least evaluation by your MD -- To make sure there are no other health problems either instead of or on top of gluten issues. I have a strong family history of cancer so personally I have to be very mindful of health problems. My dad died of stomach cancer. So I wanted to make sure there wasn't something more scary or just something different like ulcers or diverticulosis going on that might need to be followed up on by the doctor.

I think a couple of the big reasons people make a decision to go for a diagnosis rather than trying the gluten-free diet are:

- Not wanting to make a drastic change without having to. The thought of the gluten-free diet can be daunting at first. And what if you do all that and it doesn't work. So many of us being so sick for so long, most of us feel like we've tried everything with either only partial improvment, or temporary improvement. What if this is just one more thing that doesn't work.

- Family members/friends not "believing in" celiac. This is such a common thing to hear about here it's just ridiculous. A lot of the time they have watched us be so sick for so many years that when we think we might be intolerant to wheat, it just sounds like another bizarre health kick. So the people around us think we've finally gone off the deep end. They don't know what it's like to live with these symptoms every day for years and sometimes decades. Then we end up feeling like we have to prove it rather than live it.

Nancy

[luvkin]

Thanks for the replies.

My struggle right now is convincing family members that have the same symptoms I have to stop eating gluten. Depression, fatigue, mood swings, food allergies and IBS run ramped through my family. I have an aunt who says she cannot eat sandwiches every day because she feels awful if she does. We all also have a problem with pork, too. They have stopped eating pork.

[Viola 1]

Thanks for the replies.

My struggle right now is convincing family members that have the same symptoms I have to stop eating gluten. Depression, fatigue, mood swings, food allergies and IBS run ramped through my family. I have an aunt who says she cannot eat sandwiches every day because she feels awful if she does. We all also have a problem with pork, too. They have stopped eating pork.

This is one of the reasons people insist on getting a firm diagnosis of Celiac Disease. It is an inherited disease and when I got the "paper work" I could say to my mother, brother, daughters etc. that "here it is in black and white" Go and get checked because your children, sister etc. could very well have this if they have symptoms. My daughter did get tested and was possitive and hopefully she will not have the problems I have because of not getting a diagnoses for so many years.

The second reason is that, for those of us at a low income level, we can and do get some tax relief to help cover the high cost of gluten free foods.

[happygirl]

Welcome to the board----we are happy you have found us!

There are two different sets of advice I give....one to people who have yet to go gluten free and want to know about testing, and one for those who already went gluten free.

Since you are already gluten free---I agree with your doctor. If you switch doctors, you might get arguments if you have "true" celiac---thats fine-----tell them you are just gluten intolerant.

If you want, since it is a simple bloodtest that is the start of testing (you don't have to have the biopsy), it might be worth getting an app't soon, and having your kids tested. You can still start them all gluten free after that---but then, you'll have some results. (But, non Celiac gluten intolerance won't show up on blood work for Celiac). For those who haven't started the diet, I do think it is worth it to attempt to get a diagnosis, if they have a doc who is willing to run the bloodwork.

By the way-why did your doctor in the past tell you to go gluten free? Were you tested for an allergy or Celiac?

Laura

[luvkin]

No test, just a lot of symptoms. I have been checked for just about everything else. All symptoms went away when I quit eating gluten. I have been able to go back to college after having to quit after 9 years.

[happygirl]

luvkin,

Wow-that is awesome! Going gluten free has helped so many people, and I'm happy you were able to continue your education....that is so great!

We don't really care on this board-we are here to help anyone who is on a gluten free diet. Sometimes its easier to help answer questions when we know a little bit more background.

Laura