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momforlife

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momforlife Newbie

Brand new here. I'm searching for all the help I can get, and, well... I figure you all are "experts"

I have suspected for Years that my daughter is Gluten sensitive or allergic (and my husband as well, and my MIL because my daughter is SO much like her). The doctor I approached on the subject said to put her on a gluten free diet and if she does better, then I'll know. :o I want to have her tested before we go gluten-free, but I don't know how to ask for that (we've moved to a whole new state, so new drs)

Her symptoms that make me suspicious are:

Eczema that appeared at 2m old (but went away) and Dermatitis herperiformis that is very mild, toddler tummy that never went away, and off and on complaints of pain in her legs and feet; pain so bad she doesn't want to walk. She has been complaining for a couple days, so that is what has led me here.

Granted, she is my fastest growing child... she's 7 and is now taller than her petite 9yr old sister (my mother in law was a tall woman, and so is my father so genes are at play), but the extra fat she carries (born with) I suspect has to do with gluten.

My husband I suspect as well because he has (for as long as I've known him) body wide acne, became lactose intolerant (gas, cramps, diarrhea), and occasionally other foods will set off the irritated bowel type symptoms as well. He also gets psoriasis rash on his face and scalp. I wonder at times if gluten is the culprit for his mental health and sleep issues as well. Need to get him tested as well.

We are on an extremely tight budget, and all the work needed to provide gluten free meals seems like a very daunting task. I'm quite overwhelmed by it, and it Really doesn't help that my family, Especially my husband, is stuck on the processed foods that taste "better".

So with all that... Any advice would be helpful.... am I on the right track with these symptoms? Questions welcome. :)

 

p.s. My mother was diagnosed by small intestinal biopsy, to have "the start of celiac damage" so she has been eating gluten-free since July. She pays for it dearly every time she consumes G now, with major gas, and cramps, etc. Unfortunately she is allergic to soy and has found that Quinoa makes her lips burn and swell so that's out the window. I too have begun reacting to soy with blisters  and throat tightness, so changes are in store for me too.


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cyclinglady Grand Master

Please  follow the advice of celiac experts and get your daughter tested before going gluten free,  Your doctor, like many, is woefully misinformed.  You should be tested too (all first degree relatives), even if symptom free, and especially since your mother was recently diagnosed.  Learn more about testing from the University of Chicago.  They are one of many excellent celiac centers, but I personally like their website.  

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Celiacs can have no symptoms, have anemia, have GI issues or not....the list is endless.  

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Eating gluten free is not expensive.  Buying processed Gluten Free food often is expensive though.  Instead eat whole natural foods like beans and rice!   Cook like Ma Ingalls (Little House on the Prairie).    It is a learned craft.  Plus, you will save by not eating out!  

I wish you all well!  

 

Ennis-TX Grand Master

Yes do follow up with testing, once confirmed we can help you along the road. Other intolerance and allergies are very common with this disease. Lactose is broken down by enzymes produced by the tips of your villi in your intestines, they are normally the most damaged and in some cases just gone. As this is a autoimmune disease it is VERY common to develop other issues, including other AI diseases. I developed a ton of food intolerance issues and some messed up allergies like corn.
WE do suggest a whole foods diet starting off only. This boost healing, and makes seperationg food related issues easier. I can provide list of processed food alternatives....there is gluten-free versions of everything if you know how to track them down. But this is more then just a food change, it is a whole life style change. The transition is frustrating at first but becomes second nature with great benefits in the end.

Victoria1234 Experienced
5 hours ago, momforlife said:

and Dermatitis herperiformis

Then she has already been diagnosed. Dh equals celiac, although I never heard of a MILD case. It's usually quite extraordinarily disturbing.

kareng Grand Master

If she was actually diagnosed, by a skin biopsy, for DH, then she has Celiac.  NO need for further testing.

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momforlife Newbie
7 minutes ago, kareng said:

If she was actually diagnosed, by a skin biopsy, for DH, then she has Celiac.  NO need for further testing.

Open Original Shared Link

 

 

1 hour ago, Victoria1234 said:

Then she has already been diagnosed. Dh equals celiac, although I never heard of a MILD case. It's usually quite extraordinarily disturbing.

My mistake... HUGE Oops...

She hasn't been diagnosed with anything as of yet. I couldn't remember the name so I googled and DH came up. Well that was wrong.... it is Keratosis pilaris she has.

i just really don't want her to get to 20 years old and finally become allergic to lactose like her father, and continue to gain so much weight that she needs knee replacements, and diabetes,  and depression, and bipolar, and brain fog and dementia beginning at 48 and dead at 50 like my MIL, or like my mother having allergies to soy, egg, now corn and milk too, also a diabetic.... because of all these allergies she's allergic to a lot of antibiotics and much OTC medicine as well

Thank you for your advice thus far :)

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      Thank you! This is helpful. I actually read her results wrong. It looks like her tTG test was just higher than the test goes (it only goes up to 100 and hers was higher than that so it just said greater than 100 and 0-3 would have been normal). And the 109 was a different iga test (immunoglobulin A, Qn, Serum). The ema was just a straight positive. I think I'll just move forward with gluten-free for her and have the other kids and us still eat some till our tests next week). How do you completely eliminate gluten from the kitchen? Like the flour shelf, I wiped it all down and got rid of flour but what if one tiny speck of flour got in something, does that derail everything? Is the dishwasher good enough to clean baking bowls, etc? Luckily she loves larabars and most fruits and veggies and rice. Once the kitchen is safe home will be fine. It all makes sense now why she hates waffles and pancakes and always asks for rice for breakfast.
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      The EMA is an older test that isn't run so often any more. I think it was the original test developed to detect celiac disease. It's fairly expensive to run because, if I recall correctly, it requires mammalian organ tissue to execute. But when it is positive, it's a pretty safe bet that there is celiac disease.  I would suggest discussing your options with your physician. One option would be to trial a gluten free diet for a few months and get her retested. If test scores decline significantly, that would be evidence that the high numbers were being caused by celiac disease and not something else. If you must proceed with an endoscopy/biopsy, push for getting one sooner than later and she would still need to be consuming gluten. https://www.beyondceliac.org/research-news/when-blood-tests-results-are-highly-positive-a-biopsy-might-not-be-needed-to-diagnose-celiac-disease/   https://www.gastrojournal.org/article/S0016-5085(24)00123-9/fulltext    
    • lizzie42
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