Next Step To Take

[amy31]

I so appreciated those who wrote a couple of weeks ago when I received my test results. Ever since then I have been uncertain what to do next.

Briefly, I'm 31 and have several symptoms including loose stools and diarrhea, gas, abdominal cramping going down into the legs, abnormal level of fatigue, mild feeling of loss of balance/lightheadedness, canker sores, headaches,and went through infertility in the past.

I had the full celiac panel, am not IGA deficient, and came back positive only for IGG TTG with 11, and the top of the normal range being 5. The PA who did the testing felt it pointed to celiac but was not definitive, and advised me to either go for a biopsy or to start a gluten-free diet as a trial. I did not want to do that, because 4 weeks before my test I had tried two weeks of gluten-free already, and 2 weeks before that I had tried 1 week of gluten-free. I did not want to do any more experimentation without first ruling out celiac. If I can rule that out I'll be happy to go gluten free.

I called U. of Chicago celiac disease center and the woman there did not think that their doctors there would have recommended a biopsy for me with a test result like that.

I've been waiting it out till I can have a good three months since my gluten-free experiment to retest again, but because of the concerning symptoms, and the fact that I do not even know if I am "barking up the wrong tree" altogether, it is kind of scary to keep on, not knowing what I'm dealing with. I also had a high reading on the "alk phos" test, 182, with the top of the normal range being 99, and I wonder if I could have bone loss. The doctor thought that reading could be not a problem, and did not pursue it. I've been pregnant and/or nursing for the last over 4 years, and still am nursing. So I feel scared in a way, not knowing if I'm hurting myself, but not sure how to find out! Unlike many others who do a gluten challenge, I do not have past experience of feeling good off gluten and knowing that that is my problem.

Obviously finances are an issue so that is why I can't rush out to get all the possible testing for any possible problem.

I'm considering trying an Enterolab TTG test, while I'm waiting to retest the bloodwork in August or September. I do not know if that is able to conclusively rule out celiac or not.

Thank you for listening, and any thoughts are appreciated.

[Takala]

Symptoms match, and you have one positive blood test. You are trending "hashtag celiac undiagnosed" yet.

I re - read the other thread. If you are in a glutenoid mixed household, esp. with small children (aka "wheat goo vectors") you may have been getting too cross contaminated during your experimental phase to have had decent results.

If I had access, and I was suffering fatigue with small children to take care of, I would go back to whomever did the blood tests and get them to give an order for the biopsy and get it over with.

[amy31]

Thank you, Takala. Yes, I do have small children and I am involved with their feeding during meals. I would always brush my fingers off but it may not have been good enough. I'm still new to all this!

Thank you for your thoughts on a possible course for me to take. It is unfortunate that the biopsies are so expensive. For that reason, I'm hoping I can avoid it. But it's true that it might provide a quicker answer.

[ravenwoodglass]

Thank you, Takala. Yes, I do have small children and I am involved with their feeding during meals. I would always brush my fingers off but it may not have been good enough. I'm still new to all this!

Thank you for your thoughts on a possible course for me to take. It is unfortunate that the biopsies are so expensive. For that reason, I'm hoping I can avoid it. But it's true that it might provide a quicker answer.

Yea brushing off your fingers was likely not enough. I wash my hands whenever I come back in my house with soap and before handling food and depending on what I am cooking either just rinse or wash between ingredients and when I am done.

With all the little ones either go with gluten free snacks like fruit, veggies sticks, gluten-free pretzels, Rice Crispies treats with gluten-free Crispis, etc as much as possible or make 'you sit when you eat' a firm rule so crumbs are left mostly on the table, play pen or TV trays if your group resists sitting down at the table. You also can't bake with gluten flour so any treats should be premade if they are gluten treats.

It also takes us some time to heal and on and off again for a bit doesn't give the antibodies time to calm down. That doesn't mean they will always show up in the blood though. Some of us can be half-dead and still not show up positive on blood tests so do give the diet a good strict try when all your celiac related testing is done. I realize the diet is a pain when you have little ones. I would have been quite overwhelmed if I had been diagnosed when my kids were little but I would give anything if I had been. Life would have been very different.

I hope the challenge gives you clear results but it the end it is how your body responds to the diet that counts the most.

[MitziG]

They should have ordered the biopsy. My positive blood test was the TTG, with a level of 6. Under 4 was negative. Yet I have had celiac for 30+ years and the endoscopy clearly showed that. Total villous atrophy.

In your shoes, I would insist they do it NOW.

[amy31]

Thank you, Ravenwoodglass and MitziG. Your input is much appreciated.

I plan to make an appointment with a GI tomorrow. Today I've had dizziness and increase of my problem with balance. It has me quite concerned. I do not know if that is connected with the other problems or not, but I do hope to get to the bottom of it. Even if I end up having to do the endoscopy. It is a shame that it is so expensive.