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

Family

T.H.

By T.H.
in Super Sensitive People

Recommended Posts

T.H. Community Regular
T.H.
Posted

So how does your family react to your super-sensitivity? Supportive? Doubtful? Aggressive on your behalf or against you? What's been your experience?

And how do you deal with problems that crop up with this?

How do you deal with the limitations placed on you vs. what your family can do and experience?

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

Celiac.com Sponsor (A8-M):


AVR1962 Collaborator
AVR1962
Posted

For me, food allergies ran rampant in my family so we all are aware that this person can't have this or that which is nice in a way. However, of all the family I seemed to be doing the best and seemed to escape the allergies and then it hit me like a ton of bricks all at once and then was worse than everyone else, and that I think my whole family (including me) is still kind of boggled by.

My husband is very very forgetful and thinks I can just anything or anywhere but he is getting it. It's been slow for him too, we have been married 19 years.

My limitations seem more with friends and being invited to their house for a meal, or going out for a meal. I used to not say anything but now I talk about it and I have been able to inform several of my friends of what I am dealing with. They understand and it helps.

Roda Rising Star
Roda
Posted

I wouldn't call myself a super sensitive..YET! :P However I am finding I am becoming more sensitive to lower levels than previous. As far as my immediate family, everyone is supportive. Myself and both my boys are gluten free. I am finding that my youngest(who is celiac) is getting more sensitive to low levels of CC also. Older son(non celiac gluten intolerent)I "think" is a lot less sensitive than his brother and I and it appears he can tolerate gluten free products that may or do have gluten free oat CC. His brother and I don't tolerate those things at all. Hubby is pretty supportive. I know at times he gets anoyed because of the inconvenience, but it is not directed toward anyone. Luckily he doesn't care if we go out to eat often. We were pretty much home bodies to begin with. When we do go places I always pack a cooler with food for everyone. I haven't turned down many social invites, but then again, we didn't get many before. We have a few friends that we go to their house and they understand. We don't travel much, only to my parent's and inlaw's houses, so that hasn't been an issue. We do like camping and to make it easier, we make things up ahead of time or eat safe things out of a can. Not great food, but hey, we are camping and don't want to drag everything with us. I tend to invite people to my home for dinner more now because I know I can safely eat. Hubby and I got an invite 1st weekend in Nov. to a pig roast. We accepted the invite even though my hubby will be the only one eating. I'll pack something similar for the boys and I. I don't want to give anyone the impression I can't do something because of celiac. We will go and have a good 'ol country time visiting with everyone. It does take more planning than in the past and the spontaneity is gone.

Di2011 Enthusiast
Di2011
Posted

My mum has had a big turn around in her attitude. A few months ago she said my issues weren't serious enough to be celiac. I got so sick of it that I eventually bit the bullet and showed her the worst of DH and scars. Mine has been head to knees and my knees, thighs and upper arms are plain awful looking ((still healing & scarred)). I also made a point of telling her way more than she needed to know about my digestion system!!

Now she drops by with gluten-free products she spends hours shopping around for! She even admitted to me that she has started cutting down on the wheat products and she is looking better for it.

AVR1962 Collaborator
AVR1962
Posted

My mum has had a big turn around in her attitude. A few months ago she said my issues weren't serious enough to be celiac. I got so sick of it that I eventually bit the bullet and showed her the worst of DH and scars. Mine has been head to knees and my knees, thighs and upper arms are plain awful looking ((still healing & scarred)). I also made a point of telling her way more than she needed to know about my digestion system!!

Now she drops by with gluten-free products she spends hours shopping around for! She even admitted to me that she has started cutting down on the wheat products and she is looking better for it.

I am glad to hear this! I think sometimes we shelter our friends and family from what we don't want them to know about us, or be concerned about, and then we don't understand that they don't know more. This is something I had to realize and I had to learn to open up more about what I was dealing with and what I was going thru to help others understand. It is very confusing for ourselves, let alone someone else. Good for you showing your mom your DH issues and as hard as it maybe to to talk about, maybe your mom has a better understanding what you have been thru now.

dilettantesteph Collaborator
dilettantesteph
Posted

It's interesting how they start off not believing it, and then they end up gluten free themselves. They find out that they had been very sick without realizing it. My dad had always had D problems, and so had his dad. When I got them, it seemed like some inherited thing, which it was. We just didn't know that it could go away.

It's funny how you don't want to give things up. Then, when you do, you realize that giving these things up is nothing compared to how much better it makes you feel.

Many of us have been sick a long time trying various things to treat it. We can tell before there are outward indications that this time we have finally figured it out. When it becomes obvious to others they become more supportive.

lizard00 Enthusiast
lizard00
Posted

I'm pretty much a PIA when I've been glutened, so my family is pretty protective over me! :ph34r::lol:

Seriously though, they really are protective. They saw me when I was at my sickest and know the real effects of gluten on me. On top of which I have the genetics on both sides of my family, so a couple of my other family members are gluten-free also. And they all know that a crumb will make me sick. I consider myself very blessed!

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

Celiac.com Sponsor (A8-M):


Di2011 Enthusiast
Di2011
Posted

And my son (9y/o) checks labels when we go to the store and encourages me not to itch too much!!! He is my biggest champion. I think he can see how much less I need to sleep, I'm not nearly so lethargic or grumpy and he sees I itch less since going gluten-free - so it is quite obvious to him that he prefers 'this' mum around :D

A friend of mine baked a gluten-free orange cake to bring to a gathering of school fete organisers!! It was still warm and yum-o. I've been very tentative and adverse to anything that looked baked, pasta-like etc but it was such a nice thought I couldn't resist. ((Even better that I had no effects from eating it!!))

Archived

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

Go to topic listing

  • 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. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    2. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    4. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    5. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    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

    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
×
×
  • 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.