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SnoBaby

Does "malabsorption/failure To Thrive"= Celiac?

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I'd like to make this as brief as possible, but I'm not sure how well I'll succeed in that effort. Bear with me. I am very optimistic in the possibility that I may have found the missing piece of a puzzle I didn't know I was putting together.

Ok...here's what I know. I was a very sickly baby. My mom said I had been diagnosed with "malabsorption syndrome" and she also referred to it as "failure to thrive." I was put on a gluten-free diet, and that solved the problems I had as an infant. Then, somewhere around middle school I began eating gluten. The story I've been telling (and believed to be true) was that I saw the doctor and was given the "all-clear" that I was fine, no longer had a problem. Recently, I asked my mom what happened, and she said the doctor said they didn't have to monitor me as closely anymore, that the gluten-free diet was working. (Why I started eating gluten, I don't know.)

So, many years pass, and I have various health issues that bug me....

Nutrition Deficiency

Regularly fatigued since I don't know how long.

Depression

Anemia

Multiple sinus infections every year (getting allergy shots now to work on that lovely problem)

Last year I went to the doctor b/c I was so fatigued, hair was falling out, and I had numbness in my fingers in both hands. She tested my thyroid, but it was fine. She said the tingling was probably carpel tunnell and the rest was stress. (I did ask at that time if maybe I should be tested for gluten sensitivity b/c I had it when I was young, but she seemed to think I would be much sicker if that were the issue. So, I dismissed it.)

I have had periods of wellness. And, in looking back, they were the times I was on a weightloss diet that happened to have little or no gluten...strictly lean proteins, fruits, veggies. That kind of thing.

So, here I am today...putting 2 and 2 together. A friend just told me she was diagnosed with Celiac disease and one of the prior events that clued her doctor in (in hindsight after some other serious symptoms) was when she came in with fatigue, hair falling out, and numbness/tingling in both hands.

OK...so, here's what I know. I have at the very least a real, already diagnosed gluten-sensitivity. And, at worst I have Celiac Disease. What I don't know is the following...

1. Are the terms my mom refers to just what they called Celiac disease back in 74 before they named it, or could it be something else?

2. Does it matter enough for me to seek an official, up-to-date diagnosis from a doctor as to what I have (Celiac or gluten-sensitivity)? I know that to do so would mean I need to keep eating gluten until all testing is done, but it seems like I already have a diagnosis. I just ignored it. Right?

3. Is there a way for me to track down and get my hands on the medical records from my infancy? (Aside from perhaps calling that doctor's office, assuming he's still in practice.) Is there some national medical records registry or something?

4. What else do I need to know/do besides "cut out gluten"? If doing so will resolve the issues I've been having, do I really need to go see a doctor (or multiple ones) just to get them to confirm what I already know?

I appreciate your suggestions/input. I do feel really stupid for not connecting the dots sooner.

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Hello, and welcome to the forum.

I will take your questions in order:

1. Doctors have been taught that celiac disease occurs primarily in children and is characterized by malabsorption and "failure to thrive". We also know there are a myriad of other symptoms, that it occurs in adults, that you do not outgrow it as was formerly believed.

2. This is a question you must ask yourself, not one we can answer for you. Yes, you had a diagnosis and apparently it was correct. It is not uncommon to have a "gluten holiday" during the teenage years and for the symptoms to then recur. If you wanted testing you would have to continue a full gluten diet until all testing is complete. Your childhood doctor put you on a gluten free diet, in effect giving you the diagnosis of celiac. Do you really need another diagnosis?

3. If your childhood doctor is no longer in practice, contact the county medical society of the county where he practiced and ask who is the custodian of his records.

4. You are probably already quite familiar with the gluten free diet. We can give you help here if you need it, you can read at celiac.com, there are lots of books about celiac disease which are probably more informative that most doctors. You will need your doctor to monitor your nutrient levels (which it appears you are already doing) but apart from that, all you really need to do is stop eating gluten and see what happens.

Good luck in your gluten free eating.

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Thank you so much Mushroom. You just confirmed what I had been thinking- face the truth I already know (or know fully now) and move forward with a gluten free life, healthy life.

:)

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Good luck with your diagnosis. There is so much ambiguous information among the medical community that I have been amazed. To know how 1 in 133 people can have celiac but so little training is given to the doctors is so frustrating.

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