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

Never Diagnosed... How To Discuss With Others

katiekay

Recommended Posts

katiekay Explorer
katiekay
Posted

Hi... I've never been diagnosed and will never get diagnosed since one apparent cross contamination at someone's home tonight has me in horrible stomach pain. So I'm definitely accepting that I am not going to get a diagnosis of anything since I hate eating gluten. I've seen some people say "self diagnosis"... do I just start telling people I have it and therefore can't eat gluten? Is that rude to those of you have "official celiacs"? How do you who are self diagnosed handle talking to other people when you have to discuss eating?

I have always had embarrassing gas, stomach aches, random seeming diarrhea, used to keep kaopectate on hand at all time until I went more natural with my diet/health and thought it was wrong/dangerous to medicate myself so much, diagnosed with ADD twice, memory issues to the point where I thought I had early case of alzheimer, used to try and find treatment for tiredness, always a little on the depressed side but tried meds at one point in my life and it didn't help, have a hard time letting things role off my back. One symptom that surprised me... I have always felt itchy skin and would be told by doctors to change my detergent etc or I typically ignore it... well, going off gluten and then going back on it came on with a vengence and I realized it had gone away for the time I was gluten free. ... poor circulation (cold hands and feet), loose feeling in my hands and feet if I sleep in the wrong position or sit in the wrong position.

I am so glad to be gluten free just not sure if I should lie to people and say I got a positive diagnosis so then they wont say I'm a hypochondriac and will take it seriously.

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

Celiac.com Sponsor (A8-M):


gailc Newbie
gailc
Posted

Say you are sensitive to gluten, it makes you sick. I am sensitive to dairy and beef and have been sensitive to eggs. I don't tough beef although now after 6 months I could, this is the second time for beef and now I am absolutely repulsed by it. By the way eating beef made me sensitive to poultry. I quit beef and now poultry doesn't bother me.

So say "I am sensitive but not allergic, I don't have to go to the hospital but I really get sick."

Then don't eat gluten at all if it makes you sick.

I will go back on to get diagnosed but if too traumatic I'll stop. I'll get some pain meds though.,

The problem then would be to determine how often to have a colonoscopy since Celiacs have a much much greater risk.

If my osteoporosis goes away and the lactose intolerance goes away I will self diagnose Celiac disease.

Lactose Cramps often go away in about ten minutes to a half hour with immodium. Did you know that? Bad thing to do I guess but it is seldom for me, a couple times a year. My cramps go away by themselves sometimes, but if they last over ten minutes they don't and would last 11 hours if dairy is the culpret..

My cramps with gluten are short term, a few minutes my problem is getting the intestines to move the food and all the other pains associated with constipation and the undisputed worst thing-- nausea.

gailc

It is your decision but I would discuss it with a doctor for pain help.

gailc

katiekay Explorer
katiekay
Posted
  • Author

That's what I'm wondering... if my symptoms go away with gluten free also at what point is it ok to self diagnose? I mean you are mentioning self diagnosing also and I've seen other people mention it also.

As far as meds, I personally hate meds. I am not saying that you shouldn't but they are absolutely not for me in a case where I can keep myself healthy in other ways. I just don't trust them. It seems like half the time they cause more trouble than they help.

kareng Grand Master
kareng
Posted

As a diagnosed Celiac, I am not upset if you choose to eat gluten-free because it makes you feel better. I agree with the gluten sensitive label. I'm not offended by lying & letting people think you are diagnosed to make it easier. Really, what business is it of most people, how you were diagnosed.

Don't we all know people who say a certain food " doesn't agree with them"? My mom has never had good luck eating green peppers. Some people don't do well with Mexican spicy food. Capers always upset my stomach. I guess because gluten is more a category of food, it's harder for people to accept a self diagnosis.

mushroom Proficient
mushroom
Posted

How many times have you both heard the old joke, "Doctor, doctor, it hurts when I do this" Doctor: "Well, don't do that." :lol: That's my diagnosis.

I usually say I am gluten intolerant, that it makes me very ill and causes many other health problems for me. If that doesn't work for them, that's too bad! And I agree about the meds! I have been harmed by so many that if it is not absolutely essential (and because of the prior harm some of them are :( ) I don't take them.

Gail, have you ever tried eating organic grass-fed beef? That is the only kind I tolerate. The other kind has too many hormones, antibiotics, and have eaten way too many corn lectins for me. Will keep me awake all night with racing heart. And no, I don't talk about these side effects with others :o , only here and at home. :P

cassP Contributor
cassP
Posted

i would tell people u r Gluten Intolerant. i am one of those who self diagnosed.. and honestly- it depends on the situation and the people around me- i may say im Celiac one day, and Gluten Intolerant the next.. just whatever is easy for everyone to understand and to take me seriously.

i tell all my doctors that i have it, but that i havent had the biopsy. i dont know what they write down- i think one of them wrote down "probable celiac".

i always make them type it in to the computer at the pharmacy that im "allergic" to gluten. my sister doesnt have any diagnosis- and the last time she went to the ER- she listed Gluten as one of her "allergens", so she got a "gluten allergy" bracelet.

my mom had to get labs one day- and she and the nurse started talking about gluten free stuff- and my mom asked "oh, do u have celiac?", and the nurse said "no, but i am gluten intolerant".

people are starting to understand... kind of.. good luck with your label :)

katiekay Explorer
katiekay
Posted
  • Author

hi... thanks for all of your input. I was going to get on here to write the reason I don't like saying gluten sensitivity is that it just doesn't do it justice... I mean in the book I read it said this is when people are ok having a little but alot gets them in trouble. I seem to get in trouble with even a little bit. I think it would work to tell people that I have found that I have a glutence intolerance - makes me sick to eat.

thanks!!!

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

Celiac.com Sponsor (A8-M):


MsCurious Enthusiast
MsCurious
Posted

hi... thanks for all of your input. I was going to get on here to write the reason I don't like saying gluten sensitivity is that it just doesn't do it justice... I mean in the book I read it said this is when people are ok having a little but alot gets them in trouble. I seem to get in trouble with even a little bit. I think it would work to tell people that I have found that I have a glutence intolerance - makes me sick to eat.

thanks!!!

Sounds to me like you DO have gluten intolerance, at the least. Mostly the people here that have self diagnosed from what I can tell, tried and tried to get idiot doctors to take them seriously, or couldn't get the doctors to do tests, so they removed the gluten to see if that helped and it did. Some tried to go back on gluten to get tested, but couldn't tolerate the gluten long enough to do that. Just that in itself speaks volumes. It is my feeling that if you're not diagnosed, and you have not gone gluten free for more than a few days/week or two, you should try to get diagnosed by a doctor, simply because if you DO have Celiac... there are lots of complications and other issues that can arise and need to be monitored. If you've already gone gluten-free and can't tolerated gluten long enough to get tested, you're at the very least gluten intolerant, but in cases where people are self diagnosed, I would hope like heck they REALLY are very very careful and strict with the diet, because like Dr Fansano says, being 99% gluten free just isn't enough if you have celiac. Just tell people you're gluten intolerant, and leave it at that. :) And good luck and feel better! B)

  • 1 month later...
gailc Newbie
gailc
Posted

<Gail, have you ever tried eating organic grass-fed beef?

Hi, I gave it up the second time because the cramps made me want to shoot myself. Also at the same time we had that Mad Cow scare, and I just said"that's it". I had given up hamburger several years before that. Hamburgers were the first kind of beef to bother me.

The problem with beef is that it made me sick sometimes. How can you eat a food when you know you may be up for 11 hours while your entire body empties out? I could get sick before leaving a restaurant.

I'm not trying any form of it because it repulses me now. Miss prime rib, no disire for any other beef. But when I discovered I could eat horseradish on other foods(chicken, salad, french fries) I felt a lot better having to forgo prime rib. the smell even bothers me now, except for the smell of prime rib.

I'm not saying I will never eat it again I just don't have any desire to.

gailc

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,050
    • Most Online (within 30 mins)
      7,748
    Rima
    Newest Member
    Rima
    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

    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      Hi Cristiana! It's so nice to meet you! Thank you for the kind reply I am glad I live in a time where you can connect with others through the Internet. That is a mercy I am grateful for.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
×
×
  • 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.