Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Am New Here

luvkin

Recommended Posts

luvkin Newbie
luvkin
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted
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 Apprentice
dlp252
Posted

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

Guest Villanfam
Guest Villanfam
Posted

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 Explorer
Daxin
Posted

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 Collaborator
Nantzie
Posted

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 Newbie
luvkin
Posted
  • Author

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Viola 1 Rookie
Viola 1
Posted
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 Collaborator
happygirl
Posted

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 Newbie
luvkin
Posted
  • Author

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 Collaborator
happygirl
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    2. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in...
    3. SilkieFairy
      - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash...
    4. catnapt
      - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      learned I had a high PTH level in 2022 suspected to be due to low vit D got my vit D level up a bit but still have high PTH I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

      I am on day 13 of eating gluten and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.