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Feeling Confused...

mommypfohl

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mommypfohl Newbie
mommypfohl
Posted

I have two kids and now my husband who are symptomatic of gluten allergies. My son is 3. He was born and immediately put on thickened formula with ceriel because he was choking so bad on every thing. He was sleeping 20-22 hrs a day. he was very weak. Low in muscle tone. Then he had lactic acidosis. followed by seizures. They have tested him for EVERY THING including mitochondrial disease. They can't find anything in any of the testing. Finally our family doc tested him through blood work. They found nothing except for a low IGA (?) level. Then a GI doc seen him. He swore on appearance my son was allergic to gluten. Very skinny, greatly bloated, massive GI issues. SO, he ordered a scope for a biopsy, found nothing.

A year later, our family doc recommended just trying a gluten free diet to see what would happen. Our GI doc is NOT very happy with us. To our surprise though, my son's symptoms are going away! He's gaining strength. He's feeling better. He's not sleeping several times a day for long periods of time any more. the list just goes on of the symptoms that are going away. My daughter and husband, both with very similar symptoms (Just less severe) are seeing the same results. Our GI doc says It's a fluke and we shouldn't do the diet. I don't know if I believe him because my husband has tried to reintroduce gluten and it affects him for days!

Do any of you experience this? Negative tests but positive reaction to the diet? I just don't know what to do. Common sense says to stay with the diet...

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Congratulations on finding the answer. Yes, many people have negative test results but a positive reaction to the diet. The rate of false negative is high, especially in very young children. If your GI doctor is upset with you that you changed your family's diet and now feel better, perhaps it is time to find a new GI doctor. Few doctors know a lot about celiac disease/gluten intolerance, but a good one IMO would be happy your son is improving health-wise. My own family doctor didn't know about gluten issues and didn't think I should be tested, BUT the last time I saw her and told her how I had changed my diet and got rid of all my mysterious symptoms she was happy to hear it. She said whatever makes me feel better. This was AFTER I was tested for heart problems, epilepsy, sleep disorders, Hypothyroid, lupus, Lymes disease and a whole bunch of other things that came back negative. She was one of the few doctors that DID NOT suggest this was just all in my head, even though she ordered the wrong tests. I'm curious which celiac test your GI ordered?

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

BTW, there's absolutely no harm in avoiding gluten. You won't be hurting yourself or you children at all if they avoid gluten for the rest of their lives. It won't prevent them from being diagnosed with something else if they have another disease. I don't understand why your GI doctor would say don't do it, unless he is wanting your son to keep getting sicker and sicker until he has enough damage to show up positive on the test results. The problem with some of the testing measures is that they may not show up until you are very, very sick (i.e. your entire intestine is damaged) and by that time you have a higher risk of other diseases. I hope you can find a new doctor but even if you don't ever get a positive test result you have seen the results of a gluten free diet for yourself. If I were you I would trust your body and the evidence of seeing your kids healthy again over a test that has a high rate of false negatives.

Skylark Collaborator
Skylark
Posted

It's wonderful you found something that helps your family. Not all people who can't tolerate gluten are celiac. Yes, yes, yes follow your common sense! It's a shame that your GI doctor seems to have abandoned his. Fire him and find a doctor who is willing to treat the patient rather than a series of test results.

ravenwoodglass Mentor
ravenwoodglass
Posted

I would give anything to have had your family doctor, anything. It would have made such in difference in my and my childrens lives. Please listen to him and not the clueless GI. Just take great joy in your families health and be glad that your family doctor was wise enough to recognize the celiac issues in your son. That doctor has saved him, and your other family members from a lot of pain and damage that at times can not be undone.

jerseyangel Proficient
jerseyangel
Posted

Our GI doc says It's a fluke and we shouldn't do the diet.

See, this is what I just don't understand. You submitted to all of the testing so what would this doctor have you do now--feed your child something that you know is making him sick? Ugh.

Your family doctor is right--follow your gut and do what you need to do for the baby. You are right!

Welcome :)

Officersbride Newbie
Officersbride
Posted

Wow. I would think that whatever it is that makes a child's terrible symptoms go away is the way to go. Especially a diet change that is not harmful in any other way.

...and I would agree that it may be time to find a new GI...

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