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My 3yr old's 690 IgA Result


Kifaya

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trents Grand Master

I think La Choy brand soy sauce is wheat free.


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RMJ Mentor

Are the oats you are using labeled as gluten free oats?  If not grown carefully or processed carefully they can be contaminated with wheat.

Kate333 Rising Star

Hi again Kifaya.  Thanks for your update. 

I think GFinDC's earlier recommendation to stop feeding her oats is a good one.   Not sure if Australian gluten-free regulations and food inspection practices are stronger there than here in the US, but here oats (even if labeled gluten-free) are often and easily cross-contaminated with gluten during harvesting/processing, esp. if a big food company uses the same facilities to harvest, process, and package wheat products like bread.   Nuts are also high risk for gluten exposure.  Also a good idea to avoid any spicy foods and dairy, at least for awhile to give her sensitive gut/system time to heal and more quickly return to a gluten antibody blood test reading closer to normal.  And, remember, it's not enough to merely reduce her gluten consumption; she needs to completely avoid it.

I wish you/your family quick healing, happy holidays and new year!

Kate333 Rising Star
4 hours ago, Scott Adams said:

I just want to (defensively!) add that our board is a great place to gather knowledge, we also summarize all of the latest research and other general interest info into articles, and after one gains more knowledge helping others is a great way to: 1) Use your new knowledge; and 2) Help you feel better during this covid times. After all, it's hard to do the usual things you might normally do to contribute and help others. I guess that's why I've been doing this for 25 years now!

Hi Scott.  Point taken.  But, speaking as a relative gluten-free "newbie" here, it is so easy to become overwhelmed and even frightened (esp. when first diagnosed) by the huge amount of information, data, research available on the internet, even info. well-summarized on the best websites (like yours).  Also, data and research studies are often preliminary or limited and/or can even have findings that conflict with each other.  That makes it all more confusing...

And as Ivana said so eloquently, sometimes we just need a break from reading about sickness (esp. the internet, blogs, TV news) to try to relax and remind ourselves that we--and our lives--are so much more than the sum of our illnesses, problems, and worries...:-).   

Kifaya Newbie
53 minutes ago, RMJ said:

Are the oats you are using labeled as gluten free oats?  If not grown carefully or processed carefully they can be contaminated with wheat.

Probably not! I could switch to better oats. If I remove them all the other breakfast options seem inferior! Do you trust the gluten free cereals more? She is very unhappy right now so I must have slipped up somewhere in the last few days 😂

trents Grand Master
(edited)

Look for the logo "Certified Gluten Free" when you have a choice. "Certified" would have been tested for sure. I see a lot of stuff on Amazon that is labeled "Naturally Gluten Free" and I'm suspicious of it as that would not seem to preclude cross contamination. 

I purchase a lot of "gluten free" products from Bob's Red Mill and even though not "Certified Gluten Free" I know that Bob's gluten free offerings are produced in a dedicated gluten free facility. I can't say that for everything in the stores labeled "gluten free" as opposed to "Certified Gluten Free". I also know that Bob's Red Mill does their own testing. So, what I am getting at is that it might be smart to contact these companies that make gluten free foods that you use and ask some questions.

Edited by trents
RMJ Mentor
26 minutes ago, Kifaya said:

Probably not! I could switch to better oats. If I remove them all the other breakfast options seem inferior! Do you trust the gluten free cereals more? She is very unhappy right now so I must have slipped up somewhere in the last few days 😂

There are two issues:

  • What cereal to trust to be gluten free
  • Does patient react to oats

I personally have to use certified gluten free products to keep my antibody levels in the normal range. I sometimes eat Nature’s Path gluten free corn flakes which are certified gluten free although made on shared equipment.

I went without oats until my antibody levels were normal.  Then my doctor said I could eat gluten free oats for six months after which time the antibody levels were retested and were still normal.  About 10% of people with celiac react even to pure, gluten free oats.


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trents Grand Master

A delicious alternative IMO to oatmeal is buckwheat. It is also packed with nutrition. Takes about 10 minutes to cook. It is not related to wheat or any other cereal grain. It is actually the seeds of a plant related to rhubarb.

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    • Mari
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    • Mari
      mcg Vit. B12Hi dlaino  - You mentioned that you are now feeling sick all the time. If this is making you miserable you might want to go to your health provider, describe what you are feeling and your symptoms so that theySome of the people here can give you useful advice about taking supp;ements and the amounts you could take to improve your overall health. I have increased my Vit. B12  can help you figure out what is happening. Just because you have gluten intolerance does not mean that your current problems are related to that. Some of the people here can give you useful advice about supplements and how much to take for improved health. I recently upped my Vit. D3 from 50 mcg to 150 mcg and now take either 500 mcg or 1000 mcg of vit. B12 sublingual daily instead of once a week.                                    Take care
    • trents
      Welcome to the forum, @Tyoung! It is possible that you are experiencing some kind of gluten withdrawal but I would thing that would have started to subside by now. There are a couple of possibilities that come to mind. One is the polysaccharide ingredients that are typically found in prepackaged "gluten-free" wheat flour facsimile foods. If you read the ingredient lists of such foods you will usually find things like guar gum and xanthan gum. Their function is to give the product a texture similar to wheat flour but they are hard to digest and give many celiacs digestive issues. I mention this not knowing if you are relying on prepackaged gluten free food items to any extent or are just choosing carefully from mainstream naturally gluten free food items. Another is that your body is just going through adjustment to a major dietary change. Wheat is a significant component to the typical western diet that supplies certain nutrients and some fiber that has now been withdrawn suddenly. Are you experiencing any constipation? Also be aware that foods made from gluten-free flour are typically devoid of nutritional value. Wheat flour is mandated by government regulations to be fortified with vitamins but gluten-free flours are not. It can be smart to compensate for this with vitamin and mineral supplements. Still another possibility is that in addition to being gluten intolerant, your also have other food intolerances. One small study found that 50% of celiacs reacted to dairy like they do gluten. That number may be on the high side in reality and more research needs to be done. However, it is true that dairy intolerance is very common in the celiac community. Another common "cross reactive" food is oats. There are certain foods whose proteins closely resemble gluten and cause the same reaction. About 10% of celiacs react to the protein "avenin" in oats like the do the protein gluten. You might try eliminating dairy and oats for a few weeks and see if your symptoms improve.
    • Tyoung
      Before my diagnosis I would consider myself pretty much asymptomatic other than a few flare ups of what I previously thought were ibs symptoms. After having iron deficiency as well I had a positive blood test and EGD. I have now been gluten free for about a month but my symptoms have gotten worse. I now have bloating, acid reflux, and pain in the upper abdomen on and off most days. I am pretty positive I am not being glutened as we overhauled our whole house to be gluten free and haven’t eaten out since the diagnosis. Has anyone else experienced a worsening of symptoms after going gluten free? Will it subside? Or is there something else I should be concerned about. Thank you! 
    • RMJ
      That is strange.  Other pages talk about testing. The one thing I like about GFCO is that the handbook for their certification process is available on their website.  I may not agree with the whole process, especially the reduced testing, but at least I can see what the process is. I wish the other certifying organizations would publish their processes. GFCO 2024 manual
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