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How To Deal With Those Who Don't Understand


NYC-GFRN

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NYC-GFRN Newbie

I am newly diagnosed and have been off gluten and wheat for over a week with great improvements but not total relief. my partner gets impatient with me if i have symptoms and don't feel up to doing usual activities and says that i only get this way (meaning having symptoms) around him and implies that i am somehow doing this intentionally--today i had a product that contained wheat without knowing it did-l did a search after i started experiencing symptoms and found that what i ate was not gluten-free/WF). i am so hurt because he rarely has any GI distress or reactions to foods so of course how could he understand? how do you handle this? it was hard enough but a relief to get an answer to why i was having my constant symptoms but i need support not to feel bad. has anyone else experienced this?

thanks! :P


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mushroom Proficient

It makes life really hard when we don't get the support we want from our loved ones. It is early days yet. We can hope that you can teach him how much gluten hurts you and how hard you are trying to avoid it; enlist his support in keeping you gluten free and see if you can win him over that way. That's the best I can offer. If he sees you are really serious, that you are really suffering when you accidentally ingest gluten, then you can perhaps get him on your side. When you find your partner unsupportive the worst thing you can do is wimp and whine;you must be assertive and tell him/her that this is what you need to stay healthy. If they can't respect that then they don't deserve you, plain and simple. It is not your fault!!

NYC-GFRN Newbie
It makes life really hard when we don't get the support we want from our loved ones. It is early days yet. We can hope that you can teach him how much gluten hurts you and how hard you are trying to avoid it; enlist his support in keeping you gluten free and see if you can win him over that way. That's the best I can offer. If he sees you are really serious, that you are really suffering when you accidentally ingest gluten, then you can perhaps get him on your side. When you find your partner unsupportive the worst thing you can do is wimp and whine;you must be assertive and tell him/her that this is what you need to stay healthy. If they can't respect that then they don't deserve you, plain and simple. It is not your fault!!

Thanks so much Mushroom!! I will give it a shot. I definitely feel better after reading your reply! Have a great night :D !

tarnalberry Community Regular

I don't have a lot of patience for that sort of stuff. I'd probably say something along the lines of "wow, are you really that self centered that you think MY feeling like sh$! revolves around you? really?" I would then probably point out all the times I did participate in the "usual activities", and add "if I really wanted to pretend I was sick just to get out of seeing you, don't you think I'd pick something easier to fake and that still let me eat decent pizza?"

Might be a little heavy handed, but I have no patience for those who think you should live in their body, mind, and pace.

msmini14 Enthusiast

lol Tarnalberry, that would have been something I would say.

I think Mushroom gave good advice. It took awhile for my dh (back then he was my bf) to understand that it is a priority for me to eat gluten-free. Most people need to learn about the disease and what it does to us before they can see it from your point of veiw.

If he still wishes to be this insecure with your health then I would move on.

I still suggest explaing this situation to him, it will take him and yourself awhile to catch on but hang in there.

Ahorsesoul Enthusiast

IMO, I don't think it's an issue with food or education of the effects of gluten. It's respect.

If a person respects you they respect your views (doesn't mean they agree with you) and your limitations (what you eat, what you believe in and physical limitations).

Yes, education can help but if it's they don't respect you it will not matter. The problem will be their excuse that you are too much trouble.

I had a friend who had several health problems (probably all because she was in her late 60s before someone re-read her chart and found out she was celiac). She was allergic to horses and had asthma so bad that she'd end up in the hospital after being around either. She had been told by her doctors to not even visit people who had horses and not to be around anyone who smoked.

When we'd go to visit, we always took a shower, washed our hair and put on clean clothes because we had horses. My dh smoked but never smoked while we visited her, even if her dh was smoking in the same room as she was in. It was out of respect for her health. It did not matter to us that she and her dh did not respect her health.

And yes, she did die because of her lack of respect of her health not from old age. I miss her a lot but she did teach me a very vauable lesson about respect.

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • 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 
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