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

How Do I Get People To Take Me Seriously?


sparkybear

Recommended Posts

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.


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



Celiac.com Sponsor (A8-M):



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 :)

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. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

    2. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

    5. - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

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

    • Total Members
      133,152
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
    • trents
      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
    • knitty kitty
      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals.  Low or deficient  Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D"  Possible Role of Vitamin D in Celiac Disease Onset  "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)."    Prevalence and correlates of vitamin D deficiency in US adults
×
×
  • 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.