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Celiac and OCD


Bookgirl32

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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?


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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!

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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