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Feel like my world is upside down

gatewaytobeing

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gatewaytobeing Rookie
gatewaytobeing
Posted

I'm 48, have had a lifetime of health problems, a long list of diagnoses (including degenerative osteoarthritis, early osteoporosis including a broken hip at age 26, fibromyalgia (if that's real), hashimoto's thyroiditis, thyroid nodules - 1 of them over 1" large and recently biopsied and genetic tested with a result of 40% chance of cancer - , years of severe period problems with flooding, anemia, huge ovarian cysts, finally culminating in a total hysterectomy 3 years ago which also diagnosed stage 4 endometriosis, and the list goes on. I have SUSPECTED gluten off and on, among other things, but gluten most of all. I don't have a lot of the classic intestinal issues, although I do get random bouts of nausea and have daily constipation from my meds for chronic pain. ETC!

Anyway, I had the blood test done twice over the years, celiac panel, and both times negative. Then before my hysterectomy after doing more research and still suspecting gluten, I went gluten free for 8 months (first month was strict and total, but subsequent months involved tiny cheats based on me not being 100% sure the diet was necessary). I felt AMAZING the first 2 weeks and thought I had finally found the answer to everything. But as time went on, not so great anymore and then went back to a normal diet.

So, having suffered some more, I decided to revisit the gluten possibility this month. I went online to EnteroLab and ordered the stool test. I just got the results yesterday and had a Fecal Anti-gliadin IgA of 159 Units (normal is less than 10). My reaction was mixed, but mostly happy and feeling validated. And I thought I'd probably go ahead and enjoy gluten a few more days up to a week before jumping back in 100%, but this morning woke up and realized I just didn't want one more bite - I wanted to be done hurting my body. So I had zero gluten today - day 1. Spent the day researching, writing lists, and then re-finding this group that I have not been a part of since 2009.

I made a post about my lab results, and got only one response - basically saying that the EnteroLab test is crap. Now I feel like my world is upside down and I'm so frustrated I'm about to cry. Very depressed. I could really use some support, advice, encouragement...

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gatewaytobeing Rookie
gatewaytobeing
Posted
  • Author

Oops, forgot to green light the reply notification bar. Guess you have to post again to do that? Got it now.

kareng Grand Master
kareng
Posted

I am not trying to make you feel bad.  I just want you to have the facts, from a reliable source.  I, also, don't want you to miss something that might be your issue.  I believe I suggested you might check on FODMAPS, if you are negative for Celiac.  If that is your problem, it's a lot less restrictive gluten-free diet than Celiacs must follow.    I gave you a link to just one section of the Celiac Center at the Univ of Chicago.  You might want to look around that site as they have lots of good info.

cyclinglady Grand Master
cyclinglady
Posted

Wow!  You have been through the wringer like so many of us!  Has your anemia resolved?  Has the osteoporosis improved at all?  You would think that your doctor would try to get to the bottom of your health issues.  

My anemia was blamed on my fibroids and perimenopause, plus I have a genetic anemia.  Still have the Thals, but my iron-defcient anemia was really caused by celiac disease.  My GYN pushed for surgery, but my GP disagreed.  He found the Thals and later, my GI found the iron-deficient anemia when I went for a routine colonoscopy and I had passed into menopause.  

The good news is that I not longer have thyroid nodules!  Maybe being gluten-free helped or I calmed my body down somehow.  

If you do get tested again for celiac disease, please make sure it is a complete panel and that you have been consuming gluten for 8 to 12 weeks daily.

So, you have a choice to make.  You know what is best for you.  We really don't know your situation.  We are here to help!  :D

Vitaminman Newbie
Vitaminman
Posted

Had vomiting issues with arthritis , stomach issues, , ibs. For 30 years. Lots of fatigue and pain all over. I quit eating wheat, took serrazimes. (Protelitic enzymes) these digest undigested proteins called ( fibrin, scar tissue)..

all symptoms went away. Anyone with these symptoms should at least invelestigate what I have done. Light a small candle, you will get some light

Vitaminman Newbie
Vitaminman
Posted
20 hours ago, gatewaytobeing said:

I'm 48, have had a lifetime of health problems, a long list of diagnoses (including degenerative osteoarthritis, early osteoporosis including a broken hip at age 26, fibromyalgia (if that's real), hashimoto's thyroiditis, thyroid nodules - 1 of them over 1" large and recently biopsied and genetic tested with a result of 40% chance of cancer - , years of severe period problems with flooding, anemia, huge ovarian cysts, finally culminating in a total hysterectomy 3 years ago which also diagnosed stage 4 endometriosis, and the list goes on. I have SUSPECTED gluten off and on, among other things, but gluten most of all. I don't have a lot of the classic intestinal issues, although I do get random bouts of nausea and have daily constipation from my meds for chronic pain. ETC!

Anyway, I had the blood test done twice over the years, celiac panel, and both times negative. Then before my hysterectomy after doing more research and still suspecting gluten, I went gluten free for 8 months (first month was strict and total, but subsequent months involved tiny cheats based on me not being 100% sure the diet was necessary). I felt AMAZING the first 2 weeks and thought I had finally found the answer to everything. But as time went on, not so great anymore and then went back to a normal diet.

So, having suffered some more, I decided to revisit the gluten possibility this month. I went online to EnteroLab and ordered the stool test. I just got the results yesterday and had a Fecal Anti-gliadin IgA of 159 Units (normal is less than 10). My reaction was mixed, but mostly happy and feeling validated. And I thought I'd probably go ahead and enjoy gluten a few more days up to a week before jumping back in 100%, but this morning woke up and realized I just didn't want one more bite - I wanted to be done hurting my body. So I had zero gluten today - day 1. Spent the day researching, writing lists, and then re-finding this group that I have not been a part of since 2009.

I made a post about my lab results, and got only one response - basically saying that the EnteroLab test is crap. Now I feel like my world is upside down and I'm so frustrated I'm about to cry. Very depressed. I could really use some support, advice, encouragement...

I had many symptoms as you. I went gluten free, don't eat any modified food starch, read labels, it usually is made from wheat. Pain, IBS

vomiting was common. All symptoms gone now. Also took serrazymes. Really helped. 

GFinDC Veteran
GFinDC
Posted

Hi Gateway,

Well, I am sure you didn't come back to the forum for no reason.  It seems to me you know somehow that gluten is a problem for you.  Tests or not.  Some people never test positive on the standard antibody tests, but they still have celiac disease.  It's not necessarily an easy condition to diagnose.  If celiac were easy to diagnose, maybe there would be a lot less than 85 to 90 % undiagnosed celiacs walking around.  It doesn't help that some doctors won't test for it either.

You can get the blood antibody tests again, it may show something now.  Or it may not.  But you can still go gluten-free anyway.  Just don't expect everything to be perfect in a few weeks.  It can take months or years to fully recover, depending on age and the amount of damage etc , etc.  Sticking with the gluten-free diet is the only way to get better though, if it is celiac disease.  So you may as well stick with it this time.  Not for 8 or 9 months, but for 3, 4 or more years.  For life if it is celiac.

There is plenty of other food to eat that is nutritious and gluten-free.  Stick with meats, nuts, veggies and fruit and you should be fine.  Try to mix it up some though and not eat the same things all the time.  You may need to stop dairy for a few months also.

Going gluten-free is a great thing for people with celiac, and keep make our lives /heath much better.  It may take some time, but getting healthy again is worth it.

You can do it! :D

 

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      my ttg iga was 16.5 3 months ago and jumped to 30.1 last week. my iga was 415 and jumped to 455. This was done at a different lab though than the first test for ttg iga one had units as ml the other as cu... so not sure if they really jumped as much as shown. i am so strict on my diet and have no clue why this is happening  thank you for attaching this, could this happen randomly even after being gluten-free for so long ? my ttg iga was 16.5 3 months ago and jumped to 30.1 last week. my iga was 415 and jumped to 455. This was done at a different lab though than the first test for ttg iga one had units as ml the other as cu... so not sure if they really jumped as much as shown. i am so strict on my diet and have no clue why this is happening 
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