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

My Parents Don't Understand And Its All My Sister Fault (She Has Celiac Too)


eborzecki

Recommended Posts

eborzecki Explorer

I was diagnosed with Celiac through a blood test last week, since my sister has Celiac and was diagnosed through endoscopy they told me that either way I will have to go gluten free so I decided not to do the endoscopy and repeat the blood test again later to make sure my IGA and TTG antibodies are going down.

My mom doesn't understand that even a little Gluten can hurt, and its all my sisters fault. My sister was diagnosed 4 years ago, she has the upset stomach symptom and she doesn't mind munching on gluten from time to time. I have the brain fogs, falling out hair, DH and symptoms that don't last a day and a little gluten really can hurt.

My husband who I thought would be less understanding is helping me through this all the way with watching when we cook and clean and anything that can make sick, I just want to get better and get my beautiful hair back.

My mom on the other hand says I'm paranoid and that a little won't hurt, she says that I am overreacting and that a little won't kill me.

Not only is this hard on me as is, but her not being helpful and honest with what she puts in the food is pushing me to the point where I either have to bring my own food there or not go there at all.

How do you deal with your family being like this, we are going over for Thanksgiving to my in-laws and I am worried that they are going to look at me like I am crazy for not eating the Turkey because of what was put it in, I am bring my own green bean casserole and cake, but I am so sick of people looking at me like a stranger, over-reactor, and like i am nuts.

I hate shedding tears because of this, but its so hard.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Maybe some info fro the experts? print out & highlight the important 2 or 3 sentences. There are more than just these 2 so you can print out more "evidence." Google "Celiac Center"

Open Original Shared Link

Q: Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis.

My mom was telling me about all the people that were telling her I didn't need to be sooo strict. I told her the Univ Of Chicago Celiac Center told me I must be. She sort of thinks they are my "consulting" docs. when anyone says anything to her, she says "her specialists at the Univ of Chicago hace told her...."

Open Original Shared Link

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms.

Booghead Contributor

Thats pretty tricky. I'm sorry you have to go through that. My mother is very understanding and the more I tell her (no cross contaminination from colandors, wood spoons, etc.) the more she changes. So when I told her about colanders she went "Oh, really? I never thought that would matter much" and then the next day she is telling her friends that we need gluten free colanders. But we are going to my grandmothers for thanks giving and I politley asked her not to put stuffing in the turkey and it bugged her a bit. But I think she will comply. If not I will get glutened because I am eating the turkey. Hope everything goes well for you! Green Bean Cassorele is my favortie but I didn't know it could be made gluten free. If you have time post the recipe for newbies like me.

Good Luck! And Happy Thanksgiving. (Some one on here told me it's about the people you are with not the food.) B)

Celtic Queen Explorer

I'm so sorry your mom doesn't understand. Have you explained to her that you'll be sick for more than a day if you eat gluten? Explain exactly what happens, in all the gory detail. Tell her how long it takes you to recover. Maybe she'll get the point then.

You also might want to mention to her that by eating gluten both you and your sister are putting yourself at a higher risk of getting an autoimmune disease or cancer in the future. You might want to mention the large number of people on this board who have Graves, Hashimotos, Diabetes, Lupus, Fibromyalgia, etc. in addition to their Celiac Disease.

I don't think it helps that your sister isn't taking this seriously and thinks it's okay to cheat. But there's not much you can do about that. If you can't trust your mom to give you gluten free food, you may have to bring your own from home. Maybe then she'll take you seriously.

It's funny how people sometimes react differently to our diagnoses than we expect them to. I was expecting to have a problem with my mother-in-law, but she's been awesome. She called Honeybaked Ham to check that the ham was gluten free.

Reba32 Rookie

You could also point out that just simply for the fact that you already have Celiac disease, your life expectancy is less than a "healthy" person's. And if you (and your sister for that matter) continue to indulge in gluten-y foods, you shorten your life expectancy even further, even without noticeable symptoms.

Jestgar Rising Star

Maybe some info fro the experts? print out & highlight the important 2 or 3 sentences. There are more than just these 2 so you can print out more "evidence." Google "Celiac Center"

Open Original Shared Link

Q: Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis.

My mom was telling me about all the people that were telling her I didn't need to be sooo strict. I told her the Univ Of Chicago Celiac Center told me I must be. She sort of thinks they are my "consulting" docs. when anyone says anything to her, she says "her specialists at the Univ of Chicago hace told her...."

Open Original Shared Link

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms.

I like this.

Then tell your mom that you are very very sorry that your sister is willing to risk her life and health, but you are not going to follow the same path. If she can't respect your decision to remain healthy, you won't be eating at her house.

Chad Sines Rising Star

And? So what if they do not get it? Talking to some people is like talking to a wall. If anyone does not approach it from the angle of a listener, then I think it is not worth the hassle.

There are lots of people who will not get it and some who will be a pain in the a.. about it. You are worth so much more than the time to stress over it. Your only job is to care for yourself, not to educate people. If friends and family are causing issues and stress, then it makes sense to avoid those people till they get it. If you do go, then you know you have to bring your own food.

I have been fortunate to have good friends and family.


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



Celiac.com Sponsor (A8-M):



Lima Bean Newbie

Has your mom been tested? Maybe she's afraid she has it, too?

I think "special diets" are hard for many people to stick to. Look at how many people you know who are supposed to eat low sodium but go to McDonalds twice a week. Or a diabetic. drinking 6 cans of beer & ending up in the hospital, only to do it again a few weeks later. We can stick to our diet or cheat, its our choice (adults anyways). The person who encourages the diabetic to have another or the Celiac to eat a bite need to be ignored and avoided.

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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,334
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.