Very new to this

[Pcparkman]

I really need to know if anyone on here has adrenal insufficiency? On Jan 31st, it will be 3 year anniversary on my adrenalectomy. Life was good for awhile but been going down hill. It's like the med professionals don't listen but I'll keep advocating for me. I literally been feeling like I'm dying. They did the blood work to test for celiac the ttg igA and the ttg igG saying I'm positive for celiac, the scope down my throat is scheduled for Feb 1st. Can celiac ever get better? Or reversed? I'm scared it's not just celiac and my other adrenal gland is failing. I'm sorry, I don't want to be a negative person, but just haven't been feeling good for a long time. And answers or advice and prayers would be fully appreciated right now. I usually never mind being the rookie, but at this game not so much. 

[trents]

Welcome to the forum, PcParkman!

There have been cases of celiac remission but it eventually comes back. These are fairly rare so for all intents and purposes we should say it does not go away. It usually gets dramatically better if you go on a totally gluten free diet for a life time but that is the only therapy so for all intents and purposes it is reversed when you seriously follow a gluten free diet. Get back to us and let us know the results of your scoping and biopsy.

I have lifted you up in prayer and your doctors as well. May you have the peace that passes all understanding.

[Pcparkman]

Thank you. It's just a really hard thing for me to accept. I never believed in organic or gluten free until now. Then I find myself in a upscale health store. Eat right or die I tell myself, because unless my other adrenal gland is failing I felt like I was dying. Tge hardest part was when people say it in your head. Argh just argh. Thanks again for your prayers and kind words! 

[RMJ]

Please keep eating gluten until your endoscopy so you get accurate results!

[Pcparkman]

What? The Dr put me on a gluten free diet all ready. I ate gluten yesterday and did not feel good. 😕 

[trents]

35 minutes ago, Pcparkman said:

What? The Dr put me on a gluten free diet all ready. I ate gluten yesterday and did not feel good. 😕 

Many doctors don't know enough about celiac disease to know to advise them to keep eating regular amounts of gluten until testing is complete. If you go off gluten for a significant amount of time before testing then healing begins to happen and the testing is compromised. Testing is designed to measure the damage done by the inflammation gluten causes to the small bowel lining (the "villi"). That is true whether you are measuring the damage via antibody analysis in the blood or by microscopic examination of the biopsy taken during the scoping.

The Mayo Clinic advises eating an amount of gluten equivalent to two slices of wheat bread daily for 6-8 weeks leading up to antibody testing and for at least two weeks leading up to the endoscopy/biopsy. When is your endoscopy scheduled for?

Believe me, we have all gone through the shock you are dealing with. There is life on the other side of celiac disease diagnosis. Celiac disease will demand major adjustments to your eating habits and your social life. There will be people who say "it's all in your head" or at least give you that look. You, your family and friends will adjust to the new reality over time. The good news is that there is more awareness of gluten-related illness today than there was 25 years ago and also many more good gluten free food products. The hardest part to deal with is protecting yourself when others invite you over to eat or when eating at restaurants. But you develop strategies over time for navigating those scenarios that allow you to deal with them more gracefully. Part of it is learning to be assertive in those situations.

[Pcparkman]

1 hour ago, trents said:

Many doctors don't know enough about celiac disease to know to advise them to keep eating regular amounts of gluten until testing is complete. If you go off gluten for a significant amount of time before testing then healing begins to happen and the testing is compromised. Testing is designed to measure the damage done by the inflammation gluten causes to the small bowel lining (the "villi"). That is true whether you are measuring the damage via antibody analysis in the blood or by microscopic examination of the biopsy taken during the scoping.

The Mayo Clinic advises eating an amount of gluten equivalent to two slices of wheat bread daily for 6-8 weeks leading up to antibody testing and for at least two weeks leading up to the endoscopy/biopsy. When is your endoscopy scheduled for?

Believe me, we have all gone through the shock you are dealing with. There is life on the other side of celiac disease diagnosis. Celiac disease will demand major adjustments to your eating habits and your social life. There will be people who say "it's all in your head" or at least give you that look. You, your family and friends will adjust to the new reality over time. The good news is that there is more awareness of gluten-related illness today than there was 25 years ago and also many more good gluten free food products. The hardest part to deal with is protecting yourself when others invite you over to eat or when eating at restaurants. But you develop strategies over time for navigating those scenarios that allow you to deal with them more gracefully. Part of it is learning to be assertive in those situations.

My biopsy is scheduled for Feb 1st. They told me to follow the gluten diet the day they took my blood tests. The nurse called back and said my tests showed a slight positive. I asked her what she said then she said positive. 😏 so I was very confused. But yeah doesn't make sense if they test me for gluten while telling me not to eat it. 😒 

[trents]

They are not testing you for gluten. They are testing you for the damage to your small bowel lining from the inflammation caused by eating gluten. So, you don't want the inflammation to subside by going gluten free. How long have you been gluten free?

[Pcparkman]

17 minutes ago, trents said:

They are not testing you for gluten. They are testing you for the damage to your small bowel lining from the inflammation caused by eating gluten. So, you don't want the inflammation to subside by going gluten free. How long have you been gluten free?

They had me on it for a few weeks. I went to the ER because I literally thought I was dying. I'm very complex and Dr's are baffled with me. I'm just sick of being sick and tired. Also tired of no answers at this point I don't care if it's bad news, it's better then nothing. I tried to get into Mayo and they rejected me. I have this horrible smell when my body eliminates the gas urine and breath smell the same, I know it sounds gross but I think it's a piece of the puzzle. 

[trents]

Ideally, you should reschedule your endoscopy and go back on gluten until the new test date rolls around. I'm afraid you have been off gluten long enough now that the results of the endoscopy/biopsy will be compromised. It may be negative and this will just confuse the situation since you have one type of test that is positive and another that is negative.

Another option is just to assume you do have celiac disease and proceed with the gluten free lifestyle. If being off gluten makes you feel better then that really is the proof of the pudding. There is also something called NCGS (Non Celiac Gluten Sensitivity) which produces many of the same symptoms as celiac disease but does not damage the villi of the small bowel. There is no test for it. It is concluded to be the problem when people have celiac-like symptoms but negative celiac test results. So celiac disease must be first ruled out in order to get a NCGS diagnosis. Since you have a positive tTG-IGA it indicates you have celiac disease rather than NCGS.

Foul-smelling flatus is one of the hallmark symptoms of celiac disease but I don't know that I can extend that to breath and urine. You may have other things going on in addition to celiac disease.

[Pcparkman]

24 minutes ago, trents said:

Ideally, you should reschedule your endoscopy and go back on gluten until the new test date rolls around. I'm afraid you have been off gluten long enough now that the results of the endoscopy/biopsy will be compromised. It may be negative and this will just confuse the situation since you have one type of test that is positive and another that is negative.

Another option is just to assume you do have celiac disease and proceed with the gluten free lifestyle. If being off gluten makes you feel better then that really is the proof of the pudding. There is also something called NCGS (Non Celiac Gluten Sensitivity) which produces many of the same symptoms as celiac disease but does not damage the villi of the small bowel. There is no test for it. It is concluded to be the problem when people have celiac-like symptoms but negative celiac test results. So celiac disease must be first ruled out in order to get a NCGS diagnosis. Since you have a positive tTG-IGA it indicates you have celiac disease rather than NCGS.

Foul-smelling flatus is one of the hallmark symptoms of celiac disease but I don't know that I can extend that to breath and urine. You may have other things going on in addition to celiac disease.

Oh my, you have gave me so much information!!! Thank you! I bloat to the point of uncomfortable. I try to be gluten free eat a little here and there, been going on for a long time. Also been told I have gastreoparasis, gastritis, acid reflux... Yada Yada. They had me on 3 medicines for my stomach alone.its been a long stressful road. 

[trents]

What medicines are you on? Some medications are actually counterproductive to healing of the villi. Are you on a PPI or an NSAID?

Also, are you still eating oats or dairy? About 10% of people with celiac disease react to the protein avenin in oats like the do gluten in wheat, barley and rye.

Also, studies show that some people experience villi blunting from consuming the dairy protein casein. I might suggest you consider eliminating those things from your diet for a time.

When you go on a gluten free diet you must get serious about it. You can't "try to be gluten free eat a little here and there." That will not work. You are keeping the fire in your gut smoldering with that approach. If you are done with testing and intend to try gluten free eating in order to arrive at a firm conclusion as to whether or not gluten is the problem you must totally eliminate all gluten.

[1desperateladysaved]

I use to have major adrenal issues. I have used diet, and supplements to really help. Products with Ashwaghanda Herb excellent.   Also, discovered that Epstein-Barr virus brought my adrenals low.  You might try looking into Izabella Wentz's (RPH) books or Suzy Cohen(RPH)  They have similar experiences.

[Pcparkman]

28 minutes ago, 1desperateladysaved said:

I use to have major adrenal issues. I have used diet, and supplements to really help. Products with Ashwaghanda Herb excellent.   Also, discovered that Epstein-Barr virus brought my adrenals low.  You might try looking into Izabella Wentz's (RPH) books or Suzy Cohen(RPH)  They have similar experiences.

Oh thank you!!!! Yeah I had a tumor on my left adrenal gland and because of the size, they removed it. I just bought ashwaghanda from a book I read, Eat Dirt,. I'm holding off, until my procedure on Feb 1st, then I bought a bunch of supplements.