Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Do Any Biopsy-positive Celiacs Get Offended When Someone With

Nantzie

By Nantzie
in Coping with Celiac Disease

Recommended Posts

Judyin Philly Enthusiast
Judyin Philly
Posted
I consider myself gluten intolerant, not Celiac. The reason is that I have two genes for gluten intolerance, and no malabsorbtion issues (from Enterolab). Now, I'm 60 yrs old, and have had symptoms for probably 40 years if not more. You'd think that if I had Celiac that by now there'd be some major damage done, mega malabsorbtion, and would have developed other autoimmune diseases. This has not happened. The worse I've had is fibromyalgia, and that's not a disease, but was the result of my poor immune system struggling with the gluten, corn, and several other food allergens for so long. (By the way, my improved diet has put an end to FM)

hI ART GIRL,

So the enterolab tests for malabsorbtion too.

is that found through the blood work also?

my blood work came back low positive for celiac w/the celiac panel. Have been gluten-free for 16 months but now have malabsorbtion, and alot of auto immune dx'd conditions.

my internist and GI and chrio said if diet works you have it don't worry about the nubers.

so guess just wondered how to find to malasborbtion test

thanks

judy

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

Celiac.com Sponsor (A8-M):


  • Replies 54
  • Created
  • Last Reply
emcmaster Collaborator
emcmaster
Posted

I've not had any tests to determine whether I'm celiac or not, but by my life-changing response to going gluten-free, my naturopath said that that was enough proof to him that I was a Celiac.

I don't have any qualms about calling myself a Celiac - in fact, as far as I'm concerned, celiac and (legitimate) gluten-intolerance are the same thing.

The idea that someone could be snobby about celiac is both laughable and anger-inducing. What a piece of work, that member was.

So sorry you had to deal with that. We here are much friendlier. :)

i canary Rookie
i canary
Posted

I was diagnosed with blood work. I was way too sick to do the "gold standard." I don't worry about what anyone else says or thinks - I have celiac disease. I'm a totally different person now that I am gluten free. There is nothing out there that has gluten in it that could tempt me to eat it.

The doctor that diagnosed me, closed her office in June. Since then I've been to 6-7 (lost count) doctors. They seemed to think less of my diagnosis because I didn't do the gold standard. Hence, the large number of doctor visits. If they are that ignorant then they aren't going to be my doctor. I think I finally find one who is okay. She isn't up as much as I would like about celiac disease, but she listens.

tarnalberry Community Regular
tarnalberry
Posted

I would be offended if someone was offended by me using the term celiac without a biopsy - it would be quite elitist of them to assume that the term can be used if and only if you have a biopsy, and I hate intended elitism. I do, however, greatly dislike someone using the term, and then being lax about the diet, just like many others have mentioned on this thread.

In general, I'm a hair splitter though, so I tend to say "gluten intolerant" more often than not when referring to myself.

Nantzie Collaborator
Nantzie
Posted
  • Author

This has been a great thread. I'm not surprised at all that everyone here is so supportive. This is an amazing place. :D

I'm trying to remember all the things people said/asked so I can respond. Someone asked if it was part of a national group or a local one. It was a national one, but I'm not going to mention the name. I'm going to give that group one more chance to be nice, and if they're not, I'm going to call the main group and complain. If that doesn't go well, I'll let you guys know who it was.

I also tend to believe that it's just one person's attitude that I'm running into here, and not the organization itself. If it ends up being the organization's attitude, then I'm okay with blasting them. Because it's not right.

When I called and asked for info on the local group meetings, their first question wasn't how am I feeling, or if I knew of the local places to buy gluten-free stuff. It was "How were you diagnosed?"

It bothers me too when people just peel the toppings off the pizza and eat it. My stepmom I'm pretty sure is celiac, but she found about her "wheat intolerance" because of an elimination diet. I've told her about celiac and she has all of the classic symptoms, but she doesn't want anything to do with more restrictions. Although a lot of her continued health problems may be because she's getting glutened just about every day. It drives me nuts that she won't even look into it. And there she goes eating toppings off of pizza and taking the bun off the burger. Won't even TRY gluten-free. <_<

Oh, and I'm not in the UK, I'm in California. That's terrible that people there with gluten intolerance are running into some of the same roadblocks as we are here. We always thing of the UK as being so much more ahead of things when it comes to celiac.

Amen to the poster who said that ALL people with health problems who are stigmatized and ridiculed and made to feel like they're making it up need support. A lot of my symptoms were neuro. I could barely walk most days. If it weren't for finding out about celiac, my next doctor's appt would have been to discuss getting a handicapped placard for my car, because it was just getting worse.

The worst part of it though was several of my family members thought I was just being a whiner or even outright faking it. I gave birth two times with NO DRUGS. None. I have a high pain tolerance. Less than 24 hours after I had my son, I carried my 19mo daughter out of the hospital. No big deal. No problems. Any kind of pain that >> I << can't handle should be taken seriously. But it wasn't. That was the worst part. Because I'm a touch chick, and to be treated like a weenie and not believed was the worst part of this whole thing.

I think that's why this has stuck in my craw for so long. Not being believed or being treated like I had to qualify for support...? With all that I've been through? Are you nuts?

That's why THIS PLACE is so amazing. Everyone is so open and so willing to believe people at face value. And for every odd, unlisted symptom, there is almost always someone who will say, Hey, me too! I thought I was the only one who had insomnia, nightmares, balance problems, weird non-DH skin reactions, or whatever.

I hope everyone is having a good start to their weekend. We had pizza night thanks to Whole Food's gluten-free Pizza Crusts. Mmm.... Pizza....

Nancy

Archived

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

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


  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748
    Leeila
    Newest Member
    Leeila
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...