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

Completely Frusterated!


linsmad

Recommended Posts

linsmad Rookie

I am new to this board...My husband was diagnosed about 5 years ago with celiac disease. Since that time I have been helping him adjust to his "new lifestyle". I have learned how to bake gluten free breads, cakes, cookies, and make most his his food favorites gluten free. This has been fairly successful, until the past year. The past year has been the most difficult yet. I thought the beginning was difficult, but I find that as time goes on he is more and more sensitive to accidental "glutenings". I have read on this board that other people have trouble with trace amounts of gluten in their system. My husband becomes like a totally different person (One I find incredibly difficult!!!) He makes PMS look mild during these "attacks". Is it normal for your body to become much more sensitive to gluten as time goes on? We have seperate toasters, butter containers, different utensils, etc...With the exception of my entire family going gluten-free can anyone make any other recommendations??? Could there be cross contamination from sponges that are used to clean both gluten-free and non gluten-free foods? Does anyone know of any resources that can help me reduce this as much as possible? I am at my wits end!!! Does anyone know of anything that could be helpful once there is accidental glutening? I am sorry that I am rambling, but as I have said...I am definitely at the end of my rope!!!

Any help would be really appreciated!!!


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



Celiac.com Sponsor (A8-M):



gfgypsyqueen Enthusiast

Wow you've been braving this battle for 5 years without this site! I'm not sure I would have made it that long! I've also had Celiacs for 5 yrs. The becoming more sensitive to gluten the longer he is gluten free is normal. My reactions are HORRIBLE!!! What helps my accidental glutened days/weeks is Motrin and allergy meds. But I have a contact allergy too. The kitchen sponge kills me when it has been used on normal pasta pots and bowls. My hands crack open and bleed. Sometimes my first idication that I have been contaminated is the severely high irritation level and willingness to argue over anything. I have found several levels of glutening (ate gluten, slightly contaminated food, contact).

Does your spouse agree that it has been a hard year? Does he see the symptoms that you see? If so, sit down and talk about what would make it easier for him to get through his reaction? Minimal talking? Try to avoid taking the bait for the arguement? Try tracking his food, drink, and reactions for a few weeks. You may find the culpret that way. Drinks always shock me when they contain gluten.

Also, since it has been such a hard year, look at what he uses or consumes regularly and call EVERY manufacturer. Recheck all your kitchen supplies and storage arrangements. Look for the places for gluten to stick and hide. Maybe replace som of the scarred up cutting boards and hard to clean slotted spoons, etc.

Hopefully you will find what is causing the problems soon.

Phyllis28 Apprentice

The best thing to do is take the household totally gluten free. An alternative is to take the kitchen gluten free. I am the one with Celiac and I do the cooking. After many years of sharing the kitchen with my gluten eating husband I finally tossed him out. He has his own "sandwich" making station outside the kitchen. It includes an apartment size refrigerator. a small microwave and a large kitchen cart with cabinets. He has his own flatware, dishes, knives, cutting boards, ect.... All gluten food and any food that will touch gluten is kept here.

Hope everything improves.

rinne Apprentice

Hi, what a great partner you are to take on learning how to bake gluten free! :)

Good suggestions above, I wonder how is B levels are? I am under the impression that it is very common for celiacs to have low levels of vitamin B, I know that mine were and that once I addressed that the extreme mood swings and rages subsided. Don't get me wrong, I still get angry but I don't lose my tiny little mind over tiny little things anymore. :lol:

linsmad Rookie

thank you all for your great suggestions. I think that I will relegate a section of the kitchen to gluten. And also, get some new colanders and cutting boards. I didn't even think of those places as gluten hiding spots...Good suggestions. Hopefully this will help. I think that I will try to use a separate sponge for when I am cleaning gluten items, so as to avoid any additional cross contaminations. My husband is aware that he does become hostile when he has a contamination issue, although is so argumentative that he often denies that it is the issue. After a few days it passes, and he usually feels terrible that he was so angry and difficult. He even made an appointment with his internist to discuss these situations with him. The internist wasn't sure about the "glutening". I was frusterated that his internist really didn't think that much about it. Rather than glutening he thought maybe he was having blood sugar spikes, and advised him to try and eat regularly =:(

Wonka Apprentice

Do you still bake gluten items for yourself? I found that I was glutening myself just having regular gluten flour in the house. The stuff gets in the air and I ended up ingesting it.

I scrubbed out all my cupboards and designated one to the gluten items (I didn't want the crumbs falling onto the glutenfree items). I also replaced cutting boards, toaster, any plastic utensils that I cooked with and my colander. I've had alot less cross contamination since then. Oh yes, I also have two dish cloths in the kitchen. One for my glutenfree counter and dishes and one for the gluten counter and dishes (these get replaced everyday or more often if alot of gluten is consumed and spilled by my children - and they have to do the clean up I don't touch their counter).

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,082
    • Most Online (within 30 mins)
      7,748

    MelanieR
    Newest Member
    MelanieR
    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

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.