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

Depressed

Laurelf

Recommended Posts

Laurelf Explorer
Laurelf
Posted

I went to a breakfast restaurant yesterday and asked for only eggs, bacon and home fries. The waitress assured me there was no flour in the fries. Less than an hour later, I was running to the bathroom with bad cramps and got the usual yellow diarrhea and the DH that had been on my stomach got really itchy. I didn't realize how sensitive I have to be to cross contamination now. My son has food allergies and I am very careful about cross contam with him but I thought maybe I could be more relaxed about gluten.

To make matters worse, some of my family and friends have said that since I haven't been officially labelled celiac yet despite the mountain of evidence (the DQ8 gene, DH, flattened folds seen on the scope, high lymphocytes and "no significant villous atrophy" in the biopsy, IgA and fecal fat in stool) and since my primary care's nurse refuses to call me celiac because my blood is negative, that I am crazy for going gluten free. My primary care nurse actually told me I should see a therapist for insisting I have it and my friend who is a nurse said I don't have it because the atrophy was not significant!

I just want a clear diagnosis and a clear plan so I can feel better and have my family and friends understand. For example, my in-laws are insisting we go out to eat for Thanksgiving even though I won't be able to eat the gravy or the stuffing and who knows what else. Because i can't say "Look here it says celiac in my record" I feel that I have no leg to stand on.

Sorry, but it was almost easier dealing with my son's food allergies because he had clear immediate reactions and a clear diagnosis and lots of sympathy. I have been so sick for so long that I think people think "there she goes grasping at straws again".

Sorry but I had to vent. Thanks for listening.

Laurel

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

Celiac.com Sponsor (A8-M):


cat3883 Explorer
cat3883
Posted

In my book it sounds like celiac to me. Let's face it, most people know nothing about celiac disease including doctors and nurses. As for family and friends celiac disease is very confusing to them. They think you can go on this diet for a while then everything heals and you can eat gluten again. I was diagnosed about 11 months ago. I had both genes and no villi but I am 50 years old and have struggled all 50 years. I don't know how long you have been struggling but maybe your case was caught before the villi were destroyed. And as for the blood tests alot of people test negative. I dont even discuss my celiac disease diet with family and friends as they just don't get it. My sister-in-law has a PHD in nursing and she asked me if I can eat whole grain bread!! Just stick to a gluten free diet and you will get better. Find a gastroenterologist that you can form a good relationship with. To heck with what people think or say. Why don't you just tell your family and friends you have been diagnosed with celiac disease. Maybe that will help. Good luck to you.

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Laurel,

They aren't going to believe your even if it is in your medical record in huge red letters and it's tattooed on your forehead. You know you have it from the tests done and your reactions. It is not important why you can't eat gluten, you know what happens when you do.

Stand up for yourself like you stand up for your son. You know you have found what's been bothering you and that if you stay off gluten you feel a whole heck of a lot better. You can do this. Stand tall and proud that you know more than most doctors (and apparently your PA and nurse friend).

Roda Rising Star
Roda
Posted

While my mother in law believes that I have this disease, I think she thinks I'm a bit over the top. We had a recent halloween party for over 40 kids/adults and I couldn't afford to do the whole party gluten free. There was myself and three others that needed gluten free food so I made seperate stuff for us. Anyway I was constantly going behind her cleaning since the main entres were not gluten free. I think I scrubbed down my kitchen three time. She kept telling me about her sister in laws mother who has celiac and how well she is doing. She also went on to say that she eats cake and things at birthday gatherings and she never gets sick from it. So this has got my MIL thinking that you can cheet once in awhile and that you don't have to be super careful about cross contamination and it's no big deal. I tried to explain it to her but she only partly gets the crosscontamination thing. Ahorsesoul is correct. While my official diagnosis has made it easier for people to believe I have a condition, they still don't get whats involved.

frustrated09 Newbie
frustrated09
Posted

I've heard that testing doesn't always give a yes or no answer. My blood was negative and I didn't go much farther then that. I didn't want to pay for a biopsy. There's nothing the docs can do except be on a gluten free diet. My family has been fairly supportive but then they've seen the change in me when I have a good gluten free day and I can be fun with energy on those days.

-self diagnosed gluten/dairy intolerant.

Wolicki Enthusiast
Wolicki
Posted

We should come up with a "Celiac.com Approved" stamp for med records and a button to go with it. Med files with this stamp and anyone wearing a button will never be given any crap about anything ever again from medical professionals or well meaning family. Don't you all think that would be great?

Ahorsesoul Enthusiast
Ahorsesoul
Posted
We should come up with a "Celiac.com Approved" stamp for med records and a button to go with it. Med files with this stamp and anyone wearing a button will never be given any crap about anything ever again from medical professionals or well meaning family. Don't you all think that would be great?

I'm in line for the stamp and button!

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

Celiac.com Sponsor (A8-M):


Laurelf Explorer
Laurelf
Posted
  • Author

I'll take a stamp, too! Why is it so hard for people with celiac to be treated fairly? It sounds like a lot of people here have experienced problems with people believing you or taking you seriously. What is it about celiac that makes people react that way?

Thanks for the motivation Ahorsesoul and cat3883. It's easier to stand up for my son than it is for me sometimes.

As for over the top Roda, people have been thinking for years that I've been over the top with my son as I get nervous at playgrounds, birthday parties, etc and have made decisions to keep him away from certain things (like baseball games with peanuts everywhere). With him, I can stand up and say I'm his mom - I know what's best for him because I've seen the results of a reaction and I don't care what people think - I look at it as saving his life. With me, I haven't yet developed that attitude maybe because it's harder to justify being over the top when people don't understand celiac. Am I making sense?

Also, does anyone have a medic alert bracelet for celiac? I have one because of my allergies but I wonder if I should add celiac to the bracelet.

Thanks everyone! What a great group of understanding people,

Laurel

Swimmr Contributor
Swimmr
Posted
I'm in line for the stamp and button!

How bout an easy button for us with intolerances and Celiac and us who've diagnosed ourselves!

easy-button.webp

ang1e0251 Contributor
ang1e0251
Posted

Love it!!!

Ahorsesoul Enthusiast
Ahorsesoul
Posted

So I'll take a stamp, a pin and an easy button. And maybe that hardwood baseball bat for anyone that doesn't believe the stamp, pin or button.

Archived

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

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


  • Member Statistics

    • Total Members
      132,144
    • Most Online (within 30 mins)
      7,748
    Jenny0384
    Newest Member
    Jenny0384
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
×
×
  • 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.