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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    2. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    3. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    4. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,152
    • Most Online (within 30 mins)
      7,748

    denise.milillo
    Newest Member
    denise.milillo
    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

    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.