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

In The Middle Of Testing

Em314

Recommended Posts

Em314 Explorer
Em314
Posted

Could use a little support or feedback or something. Kinda in limbo at the moment.

[history]

Had symptoms which celiac could explain for *years.* Primarily (but not limited to) intense abdominal pain/GI issues and fatigue/energy issues. Talked to my doctors last year, but unfortunately I didn't talk to my PCP herself, and I ended up having my worries sort of blown off by the nurse practicioner I spoke to (we did eliminate thyroid issues, diabetes, and severe anemia as causes, at least; this year we also eliminated vit D deficiency, liver issues and gallbladder issues). Talked to my PCP *this* year (Late September) and made sure she knew just how bad the pain is and how often it happens, and she ran a couple of tests including a celiac panel, which she and I both thought was a short in the dark. She called me back early October and said it looked like celiac was a good possibility, which was initially really depressing, but have since done a bit of research (including reading through some of the stuff you guys posted here) and switched over to hopeful, because if cutting out gluten would actually get rid of the pain issues and the fatigue/energy issues, Oh My God would it be utterly worth it, and it seems like it wouldn't be nearly as restrictive as I initially feared.

[/history]

Anyway, met with GI specialist a few weeks ago who said based on test results I amost definitely do have celiac. (TTG, IGA 15 (flag reference range =<4), GLAB IGG >100 (flag range =>20), GLAB IGA 58, flag range >=20)- all with significant amounts of gluten-y bread products in my regular diet, in case anyone asks.) She reccommended endoscopy to get more data.

Had upper endoscopy today. Not a fun thing, but glad it's over and done with. She did the endoscopy herself, and said there were no obvious signs of celiac disease, but she's waiting on biopsy results, which we will discuss when we meet next week. Meantime she wants me to get the blood tests re-done in case the blood test itself was a false positive, which I will do on Saturday. She still seems convinced I probably have it and that I may be either be not be in a particularly severe phase with it, else the damage is farther down than she actually went. She's still encouraging me to stop gluten now (now that the endoscopy's done), so I can feel better asap.

I at this point am actually *hoping* it's celiac because that at least points to a solution, and a relatively simple one at that. I'm pretty dang sure the energy problems and pain I get really *aren't* normal, and I've been sort of in denial about that for a long time. If it's not celiac, that means there's some other cause, and I'm already very, very tired of doctors and tests (and taking time off of work and away from leisure time to see doctors and get tests, night I add.) So now, it'll actually be even *more* depressing if it's *not celiac.

Anyway- anyone had similar experiences? Knowledge, wisdom, hope, etc. to empart? This forum has actually already helped me tremendously, though I haven't posted yet. =)

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

Welcome to the forum, but sorry you have to be here. :)

Your blood tests look very positive. (I'm not familiar with the GLAB tests but my mind is a bit foggy with a cold tonight.) With so many positive tests, that's really indicative of celiac; I doubt you are a false positive as that's pretty rare. With a biopsy, most celiacs have said that their damage could not be seen with the naked eye so waiting for the microscopic examination is a good idea.

You might want to look into getting your calcium, B12, and ferritin levels checked. Celiacs are often low in these and that makes the fatigue worse. You might want to check your thyroid too since celiacs are more likely to develop Hashimoto's than the rest of the population; good test for that are TSH, TPO Ab, and free T4.... my energy problems did not go away with a gluten-free diet because I have hashimotos, but my GI issues are much much better.

I wish you luck starting out on the gluten-free diet. I found the first few weeks difficult because I went through a withdrawl where I was very cranky, tired, cranky, hungry, and cranky... I mentioned cranky right? LOL ;) Hang in there. After a month the diet was already starting to seem easy. It's not that difficult to follow if you focus on preparing your own meals from simple and real foods rather than buying gluten-free substitutes.

Glutamine is helpful to some to aid in healing, and many around here swear by probiotics... I'm sure others will chime in. :)

Good luck and best wishes!

1desperateladysaved Proficient
1desperateladysaved
Posted

I at this point am actually *hoping* it's celiac because that at least points to a solution, and a relatively simple one at that. I'm pretty sure the energy problems and pain I get really *aren't* normal, and I've been sort of in denial about that for a long time. If it's not celiac, that means there's some other cause, and I'm already very, very tired of doctors and tests (and taking time off of work and away from leisure time to see doctors and get tests, night I add.) So now, it'll actually be even *more* depressing if it's *not celiac.

I know this feeling. I hoped it was and hoped it wasn't. I took my genetic results to the MD hoping she would debunk them, but she backed them up. That along with my symptoms as I went gluten free firmed up the diagnosis. I know what you mean if it is not Celiac then whatever could it be? I was both relieved and disappointed in my positive results. Celiac is something that you can do something about. The unknown disease is mysterious and looming overwhich you have no control.

I hope your test results will be instructive and clear for you. It sounds like you already have a positive response to the diet and that is great!

Get well, soon,

Diana

  • 2 weeks later...
Em314 Explorer
Em314
Posted
  • Author

The endoscopy results confirmed celiac, BTW. I'm having my doc mail out the results (I don't doubt her, I just like having that kind of info), but she said that (IIRC, and I she RC) at least 4 out of 6 biopsies confirmed it, and the blood re-test confirmed it, too. I'm having a f/u with her in three months.

She wants me to have one more endoscopy done maybe half a year out or so (she seems quite convinced that this will be a necessary thing). I'm not so sure I'm going to actually be willing to do that, but it's a long way out, so we'll see. There will have to be some obvious demonstrable benefit to having another one done, or an obvious risk to not doing one. How willing I'm going to be will depend on how I'm feeling and what my blood tests are saying- she was able to explain why I might need one done, but she definitely didn't sell me on it, lol.

I'm sold on going gluten-free, anyway. It seems doable, but it seems like the transition's going to be a pain in the butt. :/

sa1937 Community Regular
sa1937
Posted

Em, my GI doc has not suggested that I have a repeat endoscopy/biopsy so I haven't had to ponder that. I do have annual blood tests, which come back negative so obviously I'm doing something right.

Going gluten-free is very doable and I agree that it's a pain in the butt...but once you get used to it, it becomes pretty easy. If you check the recipe section, you'll find that we eat very well. The only thing I really miss is the spontaneity of grabbing a fast bite to eat anywhere I choose.

tom Contributor
tom
Posted

...at this point am actually *hoping* it's celiac because that at least points to a solution, and a relatively simple one at that.

...

And *that's* the most important thing.

It can be tough to get used to eating a new way, but wow is it ever worth it as symptoms fall away.

Congrats on your Dx & healthier rest of your life!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.