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How Do I Get People To Take Me Seriously?


sparkybear

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sparkybear Rookie

It's early days for me in the wheat/gluten free thing, i was looking on the web for foods that could cause constipation becasue no matter how much fibre i ate i still suffered. I came accross wheat intolerance and celiac and decided to try wheat free for a while. So last week i ate no wheat and hardley any gluten and saw a dramatic improvement. This week i am eating wheat cos i am having a blood test for celiac next monday, i really don't feels so good now. Don't get me wrong i am an active individual, but so was my mum who, as far as i can tell suffers very similar problems to me. My mum no longer goes to the gym and worryingly (sp) broke a rib last year and is now suffering joint pain along with a loss in height of about 1". When i approached her about the possibility of avoiding wheat (i didn't want to scare her with the whole gluten thing) she dissmissed it as a faddy diet. My boyfriend has also commented that it's all in my mind. How do i get these people to realise that i need support even if i don't have celiac but find a wheat/gluten free diet beneficial? For the record my symtons are:-

*constipation

*stomach pains after eating (not severe, but enough)

*lethargy

*bloated feeling after eating

*i have been anemic several times

*bad dandruff

*headaches

*loss of concentration

*dark circles around the eyes

*cannot breath through my nose much

*when i can breath through my nose i have virtually no sense of smell

*Wind/gas

I'm worried that my mum could have had a gluten intolerance all her life and as a result is having problem that seem to point towards osteoperosis, also i might go that way too if i don't reaslise what the cause of my problems are.


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CarlaB Enthusiast

If your tests come out positive, you probably won't have as much trouble convincing them.

If they come out negative, tell them you feel better not eating it. My husband feels better when he doesn't eat tomato sauce. Everyone feels better if they don't overindulge in alcohol or sweets. What difference does it make if it's avoiding gluten that makes you feel better? If you just make it simple and don't try to make them understand the whole idea of gluten intolerance, it might make them more understanding. You simply feel better when you don't eat it and you get stomach upset when you do.

flowergirl Rookie

Sparkybear, you'll most likely not like the answer I have on your question. Before I diagnosed myself with gluten intolerance I received lots of rejection due to my health problems. Many doctors were eager to hang labels around my neck and treat my like I'm crazy and I guess to them I did seem crazy because I had lots of anxiety and depression with gluten ingestion and my central nervous system was going bonkers. :o:P

Now that I'm gluten-free and my heath has returned I still get lots of rejection. My doctor doesn't believe I have celiac, other people insist there must be something else wrong, others are eager to tell my this and that but I've learned that you cannot control others, you can only control yourself. I've decided that I am doing better and that is what keeps me going. I now handle peoples rejection as it comes and I am not so much bothered about their disrespect and disregard for me. Even people very close to me sometimes hurt me by insisting I add soy and dairy back into my diet, it won't hurt. :blink: How inconsiderate and insensitive!

If you are looking for people to be sensitive and respectful to you, just remember you may never find it. Sometimes you are the only one fighting for YOU and YOUR HEALTH. You can't control your mother or persuade her that gluten may be her problem because then you are just like the other people who are trying to convince you the it's-all-your-your-head BS. Lead by example by focussing on your health and getting better. Your mother may decide to follow your example... or not.

Kind regards, Flowergirl

Guest cassidy

This is always tough to deal with. First of all, you aren't alone as far as those close to you not believing the diet can be helpful. My bloodwork was negative and it took me accidently glutening myself around my husband a couple of times for him to actually see that I feel bad if I eat gluten and good if I don't. He came around because he saw the difference for himself, but he was not helpful in the beginning. Your boyfriend, depending how close you are, will also be impacted by this. You will have to think ahead when you eat out and you will get glutened and feel really bad sometimes. My husband had to learn to accept the disease because it does affect him as well and I think he may have been in denial for a little while as well.

That being said, you may not be able to get the support you need right now from your family, so you may need to find it from other places. This board is great and everyone is very helpful.

Maybe once you go on the diet permanently and your mother sees how much better you feel she will be willing to give it a try. Good luck and don't let anyone convince you to give up!

hathor Contributor

If you have a positive test, this should quiet the doubters.

If you have a negative test, you might try Enterolab. Its testing is more sensitive and can see problems before they would show up in blood work. I've certainly read here of people who have had false negatives with blood tests.

Ultimately, though, it comes down to how you feel when you eat certain things. If they don't agree with you or you feel better without them, it is nobody else's business if you don't eat them. Of course, this goes two ways. You can't make someone else accept they may have a problem. My mom has IBS and osteoporosis, but firmly dismissed the idea of being gluten intolerant when I told her my results. I may lead by example, though. I told her to be aware of the possibility and keep track of what she ate before she feels unwell. In recent years, she has concluded she is lactose intolerant, so there is always a chance she will come around on her own. Then again, she could be right and not have a problem with gluten.

Except for the dandruff (tried tea tree oil shampoo? I used to have the problem but this cleared it up), anemia, and loss of sense of smell, all your symptoms were mine. To yours, add a perennially runny nose and random sneezing attacks and you have me.

Or rather me before I gave up gluten. I'm really doing better and better everyday, except when I do something stupid and accidentally gluten myself. (I'm still early in the learning curve :rolleyes: ) I know my husband thought it was all in my mind before the Enterolab results came back. I wouldn't have minded being proven wrong, though :lol: Now, he DENIES he was a doubter, but I've known him for over twenty years. I could tell. He also knows ME well enough not to have verbally voiced his doubts to me B)

sparkybear Rookie

Thankyou for all the replies. I can see what Cassidy means, there is a lot of support here on this forum.

I have the blood tests on Monday (so far away...) so I am eating gluten until then at least. I have an important trip palnned in three weeks so i'll prob skip it after they have taken blood at least til after my trip.

I still think i'll have a difficult time with friends and family even if the blood tests come up positive, someone (i can't remeber who) said they always come up positive and the test is a bit of a joke! (aarrgh!!)

Hathor, i agree with you that when i eliminate the foods and my mum sees the difference it's making for me, it might persuade her to give it a try, but i guess i can't make her as most of you have said.

Thanks again for your support :)

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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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