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Celiac & Ssi

shade34098

By shade34098
in Coping with Celiac Disease

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shade34098 Newbie
shade34098
Posted

I have been reading alot about Celiac since my son was diagnosed almost immediately after starting solid foods as an infant. Fearing that it may be the case with my daughter after she was born, she was tested as soon as we could and saw indications that were similar to that of my son's.

We all know that times are tough and that Gluten-Free food is much more expensive.

I was reading the other day that Celiac has been listed as a "disability" requiring protection under Americans with Disabilities Act" (ADA)

Does anyone know, or have any means to find out if because of this I can file for SSI Disability benefits for my children to help off-set the cost of their food. I don't care if all I get is $100 each, it would be a huge difference and make things alot easier to provide.

I know I can file, thats a no-brainer... but does anyone know if it will be accepted? Has anyone filed on behalf of their children ???

If possible, could you PM me?? and post it here? I am sure I am not alone.

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mommida Enthusiast
mommida
Posted

I don't know of many that can handle going through all the red tape for help.

I did just find out about an organization, angel food ministries, that helps provide food for less cost for every body. They are a nation wide organization and you do not have to provide personal financial information. They have one rule that you order a "basic" package. I think they might take Celiac into consideration for letting you buy just the fruit+veggie and meat package. Or find a friend that can use the "basic" package and add your order to theirs.

ang1e0251 Contributor
ang1e0251
Posted

I run the Angel food program at my church and I would find a way for you to buy the fruit and vegetable box if you needed it. The basic box is full of gluten so not acceptable. But get with your local provider and see if they can't accomodate you. I would.

mamaw Community Regular
mamaw
Posted

celiac & SSi

Here is a little info regarding your question. Anyone can file for anything getting approved is the problem. It depends on each case as no one is clumped together --- all individual per family critria.

First number of children. Cash on hand can not be over $3000.00 for a two parent household & $2000.00 for a one parent household. All earned & unearned income must be reported. ie: savings, certificates & etc. Rental income & so on. Income cannot exceed $3500-$4000.00 gross a month.

This above is based on two children. More children would change the income levels.

One car but some can waiver in a second car.

With all the dominos in a row still will not guarentee approval.

I know everyone wishes for help because of the price of food but it usually never happens. Italy is the only place I know of where gluten-free food is given each month....

hth

mamaw

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    • knitty kitty
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      @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.
    • captaincrab55
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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 😅
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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.
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      High DGP-A with normal IGA

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      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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