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I Immediately Think Every Symptom Is Caused From Gluten...


Happyw5

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Happyw5 Explorer

I have been gluten free for about two years, and it has made a dramatic change in my life. (I won't get into all the symptoms and issues I had) I have five kids and they each have there own set of issues and I believe that most of their symptoms stem from gluten intolerance as well. I also have brothers and sisters that I believe have issues. I was never diagnosed celiac, so I think that is why I never completely take my kids off gluten. Our home is gluten free, but they eat lunches at school and so on. Does anyone else feel like they jump to gluten being the cause of symptoms?

My son came home from basketball practice tonight (12yrs) and said he could hardly run, because his body and head hurt so bad. He has many stomach issues that come and go and is sent home from school often for headaches. He does have many other unrelated issues, like a kp rash on his arms and face (but maybe they are all related) Dr's don't seem to worry, because he is overall a healthy child! My other son won't eat for days at a time because he feels like something is stuck in his throat (had throat study done and came back fine) My girls all have different issues as well.

Just thought I would see if anyone else has become obsessed with gluten symptoms?


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nvsmom Community Regular

I don't think I became obsessed... I saw the symptoms more often in people but I could be right. Right?

I saw GI symptoms in 2/3 of my kids. I made them gluten-free and those symptoms have largely improved. I think the only way to know if your kids are celiac is to test them, and likewise the only way to know if they are non-celiac gluten interant is to follow the gluten-free diet strictly. Perhaps give it a try and you'll be able to stop wondering. :)

Best wishes to you and your five.

Cara in Boston Enthusiast

I have one son with celiac and one without. My celiac son complained for a YEAR of not feeling well (fatigue, joint pain, etc.) and I assumed it was from gluten - somewhere in our gluten-free house. We restricted his diet even more (no processed foods that were not specifically gluten-free), no eating out, etc. etc. I was at the point were I was going to hire someone to come in to my kitchen and find the elusive gluten. Turns out he had lyme disease. Now I know better than to just assume it is the gluten.

My poor older son, I am constantly asking about his bathroom habits. He still gets tested every two years, but sometimes I feel we need to go in sooner. Mood swings, headaches, fatigue, etc. All PERFECTLY NORMAL for a 10 year old . . . but I still wonder.

Cara

roomorganizing Rookie

I totally understand how you could relate every symptom to gluten! After reading hundreds of posts and stories on this forum as well as dozens and dozens of medical articles, I have come to understand that celiac disease can be the ROOT of so many other conditions and symptoms. And it can be so frustrating when most doctors want to treat superficially and only what they see on the surface. We were fortunate with our oldest son -- our primary care physician was in the early stages of TRULY learning about celiac when I took our 16-yr-old for his physical. He was 5'3", in the 10th percentile of his peers, was not growing, had delayed puberty, but no other symptoms (that we recognized at the time). My concern was the short stature (pituitary? thyroid? just the card he was dealt?). Our doc wanted to run blood work, but emphasized that he was ordering a celiac panel. Tests showed tTg of 70 (<20 negative), so endoscopy was ordered. The GI doc said visually everything looked normal -- but the biopsies came back positive. We immediately went gluten-free with him and he grew over 7 inches in less than two years!

In the last two weeks, our daughter has presented with itchy blisters on her legs that broke open, got progressively larger and more angry looking, and now look like open sores. Of course, our new doc (we moved last summer), says it may be impetigo. I insisted that she be tested for DH, but he wanted to give it a week of treatment and go from there. I said I didn't want to wait a week. So we are moving ahead with the antibiotics in case they are infected, and I take her back in in a few days for the skin biopsy. Personally, with our family history, I prefer to rule out celiac before we run the gamut of every other condition it COULD BE! He was not as convinced, obviously, but reluctantly agreed to what I wanted.

That's a long story just to say "go with your gut!" Even with just a little bit of research on celiac disease, it's hard to not to see every symptom as related. I share your obsession Happy!

Happyw5 Explorer

I am taking my oldest son to his dr tomorrow. I am going to have them run a cbc and a celliac panel. He comes home constantly with headaches and bellyaches. He is constantly in the bathroom, and says its normal bm, but i no it's not... He also has had little bumps on his arms and face for the longest time. It may be nothing but I need to know!!!

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    • Scott Adams
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
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