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Trying To Get A Diagnosis


panthercreek

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panthercreek Newbie

Hi, I just happened to stumble across this website in my search for an answer to my health problems. My Dr isn't coming up with anything so I have been doing some digging of my own. I am starting to think I have some sort of food issue but I don't know if it is with gluten or not. I have been having a problem with bloating, when I wake up in the morning it isn't to bad, not very noticable. After I eat breakfast my mid section gets so big that I look pregnant. My breakfast is always Fiber One cereal with strawberries and coffee with milk and sweetner. After breakfast my stomach stays enlarged, one of my daughters teachers asked me if I was pregnant the other day, thats how bad it is. My stomach also hurts and is tender to the touch. I also just generally don't feel good, headaches, hot flashes and weak. This morning I woke up and my stomach was somewhat bloated but not to bad, I don't look 4 months pregnant, lol! I changed what I had to eat, I ate 2 scrablmed eggs and a banana. And my stomach is still just a little bloated like when I woke up. But I don't have all the symptoms that I have read about. Do my symptoms sound like I should look into the possiblity of Celiac disease. So far my Dr has run tests and I have also had a full ultrasound and not come up with anything. Thank you.


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hathor Contributor

Nobody has all the symptoms. What used to be viewed as classic celiac is only seen in a minority of patients, as I understand it.

If your symptoms vary according to what you eat, it seems to me that you have a food-related issue. One can react to a food immediately or anytime in the next, say, 48 to 72 hours, so keeping a diet/symptom journal can be useful in figuring things out.

Bloating isn't necessarily due to gluten. If you run a google search you can see that any number of foods can cause it. But if you see that it is worse following gluten, it would be worthwhile to get tested.

Have you noticed a reaction following dairy? This is a common offender. If you skipped the cereal, it could be the absence of the milk you put on it, rather than the cereal itself, which made the difference. I guess if I were you, my first thought would be lactose intolerance. It is common and it causes bloating. Hold off on the dairy or take a lactaid-type product and see how you do.

Also, you mention a sweetener. Some kinds of sweetener can also cause bloating. If the lactose thing doesn't pan out, I would try eliminating all artificial sweeteners. I know things like that can blow me up like a balloon :(

GlutenWrangler Contributor

It definitely doesn't hurt to get tested! Talk to your doctor and have him or her run a full celiac panel, and possibly a food allergy test. It's a good place to start. Good luck,

-Brian

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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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