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

Celiac and OCD


Bookgirl32

Recommended Posts

Bookgirl32 Explorer

I'm waiting to have an endoscopy, but have just had blood test results come back as "super high" according to my GP. My brother was recently diagnosed, and since we share so many other genetic traits, I've been mentally preparing myself. But my biggest concern, by far, is how this is going to effect/trigger my moderate to severe OCD, which usually manifests as hypochondria and germaphobia. I have been clean eating for a few years now, with a cheat here and there, but not always avoiding gluten. However, I think as far as the actual diet goes I will be ok (not happy about it, but not unaccustomed to limiting my diet either). I also don't have major symptoms (or at least am not aware of them, I do realize some might start to become apparent as I go along). I am worried about the absolute inability to function that I know is going to come with the cross-contamination issue. I can obsess to the point where it really hurts my family, especially my son. I need to come up with a way to be legitimately concerned with cross contamination while not letting it take over our lives. I realize everyone gets worried about this issue, but the obsession coupled with cancer risk (high, low? better on gluten free diet obviously, but what if you don't do an absolutely 100% perfect job of controlling cross-contamination? Does that leave your cancer risk as high as if you just said screw it, I'm eating gluten?) I'm totally committed to this. Not looking for "outs" at all. I hope I'm making sense. I have a counselor, am medicated, and for the most part have my anxiety under control. But I guess what I'm saying is, when it's not under control, it can be as damaging to my health and family's health as any gluten. So I need to find a way to be very strict, but not a crazy person. Any words of advice?


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master

My OCD is still present and is great for maintaining my safety, after a year or so the "panic" anxiety with it was gone....I still am OCD about avoiding gluten, cleaning my kitchen 2-3 times a day, and not letting gluten in the house period, even have people wash their hands when they enter, and take off their crumb covered shoes at the door.

If you do not want to go crazy with it...whole family needs to go gluten free, just remove gluten from the whole house, then you have no worries about it getting in your food, keeping separate cook ware, etc. I could not live like that anymore it was driving me mad, did not help gluten caused brain fog, confusion, and a mind swing of "Mr. Hyde". It is quite simple, focus on changing to naturally gluten free whole foods and cooking from scratch, omelettes, stir fries, baked chicken/fish, crock pot meals, sheet pan meals etc. Very simple. I use freezer paper on my counters for prep surface control, and make clean up easy and safe cooking by lining baking dishes with foil, same with pans, and crock pot liners in my crock pot. I use Nordic Ware omlette makers in my microwave and the grill plate with splatter cover for some meals and makes quick easy work without full replacement of cookware at first.

Read up on the newbie 101 thread, if your family misses meals....I have a whole list of gluten free alternatives. SO everything from pizza pockets, instant microwave pasta dishes, to sauces and desserts can be found now days with a bit of searching, Even have places to order from. https://www.celiac.com/forums/topic/121148-gluten-free-food-alternative-list-2018-q2/

 

ch88 Collaborator

Celiac disease can cause anxiety disorder and ocd. There is a good chance that going gluten free will help your ocd, but I don't know for sure.

A lot of people on this forum are able to go gluten free even in a shared kitchen. I am very careful about cross contamination but It is not something I worry about. Like I put a seat belt on when I drive but I don't worry about crashing. I think getting into a routine helps with that. 

9 hours ago, Bookgirl32 said:

better on gluten free diet obviously, but what if you don't do an absolutely 100% perfect job of controlling cross-contamination? Does that leave your cancer risk as high as if you just said screw it, I'm eating gluten?

Nobody does a perfect job of avoiding wheat.  Cheating on the diet, on purpose, on other hand is risky. The idea is to avoid enough wheat to allow the intestine to heal.  If you , only eat certified gluten free foods or whole foods, and are careful about washing all dishes before using them there is a very low risk of significant cross contamination. 

  A lot of people on this forum share kitchens with other people who eat wheat. It can be difficult to avoid cross contamination in that situation but it can be done.  If you put a plate in the dishwasher, for example, and it comes out clean it is very unlikely to be still contaminated with gluten. If you follow all of the tips in the newbie 101 thread you are probably fine.

If you are still worried about it you can get another blood test later on to see how well you are doing.

ch88 Collaborator

Everyone messes up occasionally on the gluten free diet and I don't think that is a very big deal. It is good to be careful but I wouldn't worry if you mess up occasionally. 

 There are a lot of processed foods though that contain gluten in them though and that can cause problems for people with celiac  disease. Oats, for example are often heavily cross contaminated. This forum is good place to ask if you are unsure about whether or not a food has gluten in it. 

lisas11lisa Apprentice

IF you are diagnosed with Celiac Disease..DO NOT purposely eat gluten. ..ever again..it is poison to your body even if you feel nothing!..Be as diligent as you can at home and out..You will still get glutened..drink tons of water when you do..eating naturally gluten-free is best..and you can find a way..to make anything you want..research!..GOODLUCK..I would never go back ..You can do this!

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.