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

Anyone Ever Feel Like Giving Up?


Gfresh404

Recommended Posts

domesticactivist Collaborator

It makes perfect sense that you are having a hard time... you are trying your best to do what you need to do for your health, yet you still feel like crap! Anyone, especially when dealing with depression or other mood disorders is going to feel bad.

We noticed that just being gluten-free was not enough for our family. GAPS made a big difference for us, and addressed the mental health side of the issues. You might look into it. (I have a GAPS Resources page on the blog linked from my profile). It may seem impractical to do in college, but actually if you have a crock pot, a freezer & fridge, a hot plate, a sink, and a cupboard or counter space, it's doable.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

I feel like giving up too.

My Dr. questions my DX because I'm newly DXed at the age of 54. She said it should have shown up sooner if I really have it. I said I thought I had a soy sensitivity too, because I get all sorts of neuro symptoms if I ingest it. She said "soy can't do that".

My blood work was negative, but biopsy showed flattened villi and a couple of ulcerations.

I asked her for a Hashi's test because I seem to have a lot of symptoms, and she said no. She did agree to testing my TSH level though. I won't find out the results until I go back in 2 months.

My GI doesn't seem to know much about Celiac? She ordered blood tests for vitamin/mineral levels and they weren't too bad at that time. She told me to just not eat gluten and I'd be fine. When I asked about my damage and the Marsh scale she didn't know what I was talking about.

I feel tired, depressed, hopeless. On Satarday night I talked to my son on the phone and he suggested I contact the various treatment centers and see if they could recommend an experienced Dr. in my area. I told my hubby I thought I should try it. On Sunday morning I logged onto the computer to check emails, etc. Hubby came into the room and asked if I had contacted the places yet. I told him I had just logged on and hadn't even made coffee yet. He yelled at me that I wasn't trying to do anything to help myself and that I'm just a whiner..went on and on. :(

I am always vigilant about making sure I'm not consuming even traces of gluten, but my hubby and son still eat it. Neither one is the least bit careful about trying to keep it contained.

I picked up the TV remote and it was covered with bright orange powder from cheese curls they had been eating. When I told them they keep poisoning me they told me I was rediculous.

I feel like crap, and I'm tired. I don't want to eat..in fact I've gotten so I'm afraid to eat.

I'm taking a handful of vitamins/minerals every day and use melatonin to sleep.

Sometimes I think I should just stop eating/taking anything..and let nature take it's course.

I wish you were here in front of me so I could give you a hug. I'm sorry your DH is being so difficult. He should be trying to help you. Get a plastic baggie and put it over that remote. That will make it easy to clean when they get their contaminated hands all over it. This disease is hard enough to deal with by itself but when we don't have our loved ones support it makes it even harder.

Gfresh404 Enthusiast

I feel like giving up too.

My Dr. questions my DX because I'm newly DXed at the age of 54. She said it should have shown up sooner if I really have it. I said I thought I had a soy sensitivity too, because I get all sorts of neuro symptoms if I ingest it. She said "soy can't do that".

My blood work was negative, but biopsy showed flattened villi and a couple of ulcerations.

I asked her for a Hashi's test because I seem to have a lot of symptoms, and she said no. She did agree to testing my TSH level though. I won't find out the results until I go back in 2 months.

My GI doesn't seem to know much about Celiac? She ordered blood tests for vitamin/mineral levels and they weren't too bad at that time. She told me to just not eat gluten and I'd be fine. When I asked about my damage and the Marsh scale she didn't know what I was talking about.

I feel tired, depressed, hopeless. On Satarday night I talked to my son on the phone and he suggested I contact the various treatment centers and see if they could recommend an experienced Dr. in my area. I told my hubby I thought I should try it. On Sunday morning I logged onto the computer to check emails, etc. Hubby came into the room and asked if I had contacted the places yet. I told him I had just logged on and hadn't even made coffee yet. He yelled at me that I wasn't trying to do anything to help myself and that I'm just a whiner..went on and on. :(

I am always vigilant about making sure I'm not consuming even traces of gluten, but my hubby and son still eat it. Neither one is the least bit careful about trying to keep it contained.

I picked up the TV remote and it was covered with bright orange powder from cheese curls they had been eating. When I told them they keep poisoning me they told me I was rediculous.

I feel like crap, and I'm tired. I don't want to eat..in fact I've gotten so I'm afraid to eat.

I'm taking a handful of vitamins/minerals every day and use melatonin to sleep.

Sometimes I think I should just stop eating/taking anything..and let nature take it's course.

I feel ya - definitely get a new Doctor. And I would just try to explain to your Husband and Child how truly sensitive an individual can be to something. Some of my relatives thought I was nuts too when I tried to explain to them about cross-contamination. It's definitely a frustrating conversation because you don't want to be a jerk about it, but at the same time you definitely don't want to get sick. Just try to have patience and consider looking at it from their perspective. Just remember you can only control your actions - you can't control anyone else's. Hang in there, I'm sure things will get better, change is never easy.

Bubba's Mom Enthusiast

Thanks so much for understang..and for your support.

I met with a dietician that usually counsels diabetic patients. She had a lot of mis-information and didn't know the answers to some of my questions. She told me to just eat the gluten free verasions of the foods I had to give up..and Bob's Red Mill was highly recommended.

I explained the 20ppm allowed in gluten-free and how it can add up. Whole foods are best, especially at first.

I told her lots of people have problems with BRM products having cc. I explained to her why it would matter if shampoo and cosmetics contain gluten and she copied the list of those ingredients for her file. I liked her, she was just not very helpful.

I asked her if she knew any Dr.s experienced with treating Celiac, and a friend of hers is one, but isn't covered by my insurance.

I know it was an imposition, but I sent her a note asking her if she could ask her friend if he knows of any other Docs..in the hopes I can find one in my insurance plan.

Archived

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


  • 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):



  • Upcoming Events

  • Posts

    • Scott Adams
    • Scott Adams
      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
    • Clear2me
      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
      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.