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How Would You Want To Be Cared For?

Country Girl

By Country Girl
in Coping with Celiac Disease

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Country Girl Newbie
Country Girl
Posted

My son is 26 months old and was dx last month. He has become a completely different child since he is now on a gluten free diet and we are very strict about it. I feel a lack of control in managing this disease though, b/c he is too young to truly communicate to me how he feels. So my question to the adults is two fold:

1. Tell me how you feel when you ingest gluten, and does it matter the amount or is it the same feeling regardless of the amount?

2. If you became unable to care for yourself, what would you want your caregiver to know about celiac disease?

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lizard00 Enthusiast
lizard00
Posted
My son is 26 months old and was dx last month. He has become a completely different child since he is now on a gluten free diet and we are very strict about it. I feel a lack of control in managing this disease though, b/c he is too young to truly communicate to me how he feels. So my question to the adults is two fold:

1. Tell me how you feel when you ingest gluten, and does it matter the amount or is it the same feeling regardless of the amount?

2. If you became unable to care for yourself, what would you want your caregiver to know about celiac disease?

1. When I eat gluten, I get a horrendous headache for two days, then for the following few days I feel like my entire upper gi tract is on fire, everything I eat hurts. EVERYTHING. Then after that slowly subsides, I get a few days of reflux. Finally, after about 8 days, I start to feel normal again. EDIT: I forgot to add the irritability. WHOOO...my poor family!

2. How important it is to watch out for contamination and to read EVERY label, or call EVERY company that doesn't clearly list all sources of gluten. It's easy to avoid the obvious stuff, but we don't get glutened by obvious stuff. The last thing for me was flavored coffee from the bulk section of the grocery store. There weren't any labels. Lesson learned the hard way.

Mother of Jibril Enthusiast
Mother of Jibril
Posted

Good question!

1. When I get glutened, the first thing I notice is that I feel anxious and irritated at everyone around me. Then I get constipated (which causes rectal bleeding), bloated, gassy, and I get an ITCHY rash. It takes at least a week before the rash begins to dry up... even longer for the bumps to fade away.

2. If I couldn't take care of myself, I hope my caregiver would just feed me lots of natural foods like meat, rice, fruits, vegetables, etc... I don't miss bread. It's not a "treat" when it makes you sick. Fresh food is 10X better than processed... you never know what might be hiding in the ingredients. Then the trick is just to keep it separate from other people's food. You can't even share a jar of peanut butter if the other person is going to get bread crumbs in it.

WW340 Rookie
WW340
Posted

My gluten reactions feel like a cross between food poisoning and a bad case of the flu. I feel sick to my stomach and often have violent vomiting, diarrhea, bad stomach pains, hurt all over and total fatigue. I also get very cranky. My husband can always tell by my crankiness before I show the other symptoms. I also itch all over 24 hours a day. My symptoms last from a couple of days upto a couple of weeks.

I never intentionally eat gluten, so cross contamination is the only way I have been glutened for the last 2 years and the symptoms have lessened slightly in degree and length, but are still very miserable. I do all I can to avoid cross contamination.

If someone was caring for me, I would like them to make 100% sure I was not getting glutened. I would also like for them to try to find or make all my old favorites gluten free and tasty versions at that. This is what I did for myself, and now feel pretty comfortable with the gluten free diet. When I missed a certain food, I would go on a quest to find a good gluten free version, if I couldn't find a quality product, I learned to make it. I spent an entire week making pizza dough, until I could make one I enjoyed.

My whole family is gluten free with me at home, other than their own cereal, crackers, or bread. All cooking is gluten free. Flour is not even allowed in the house. It helps to have that support and safety at home.

happygirl Collaborator
happygirl
Posted

Learning about the disease, learning how to make foods that he likes, never making it feel like its an imposition, and making it a part of their normal routine. One of the predictors of how well someone adjusts and maintains the gluten free diet is the support of those around them. Fully understand how to 1. read labels and make smart decisions about ingredients and 2. prepare food without cross contamination from gluten free products. Learn to convert all their 'normal' recipes.

Those are things my mother has done for me (and I'm an adult!), and it has made a world of difference. Your son is lucky to have a mom like you!

Country Girl Newbie
Country Girl
Posted
  • Author

Thank you all for your responses. It makes me want to cry to think that my son was having these feelings for 2 years, but knowledge is power. I think being able to explain to our families and friends how people feel when they get glutened will make everyone around him to be more diligent and careful around him. His disposition has changed, he was very cranky all the time, but at only 2 we thought at the time that is was just "his" personality.

Thanks again :)

Piccolo Apprentice
Piccolo
Posted

Country Girl,

Welcome, When I get glutened I can have D, floaters, migraines, and the worst is a dizzy reaction that lasts 6 hours. That is the worst and I avoid this if at all possible. Another reaction I have is my colon starts hurting with continued exposure. My longest reaction took my a month to recover.

My family and I eat gluten free, but they have their own bread etc.

Susan

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ang1e0251 Contributor
ang1e0251
Posted

I've decided that the next time someone asks me what are the symptoms I will ask, "Have you ever had the stomach or intestinal flu or maybe food poisoning?" Then I will tell them, "It's like that plus some other symptoms in different variations."

I really think that's the closest I can come to explaining a glutening to someone. It's hard for them to relate to all the different things we feel but they can relate to a time they were so sick they were miserable.

You are very perceptive in asking your questions. You are your child's voice and champion.

ShayFL Enthusiast
ShayFL
Posted

I get similar to Susan. The dizziness is the worst of all!!

mef Newbie
mef
Posted

Congratulations on finding a diagnosis and being so supportive!

1. I get migraines and joint pain. I tend to be a bit cranky too, but I am not sure if that is the pain or the celiac.

2. My mom is great at being supportive. I was diagnosed later in life and had a difficult time transitioning to the gluten-free diet. She went on the gluten free diet to support me. I was living at home at the time, so it helped not feel so alone.

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    • 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.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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