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Hi

I posted a few weeks ago about my tests not being negative and not positive. Well I started eating gluten again for the last 3 weeks after being off for 3 weeks. My symptoms returned but differnrnt instead of having 2 to3 times aday D now I can go 3 or 4 days without going to te bathroom, my hair is falling out in clumps, my legs and arms falling asleep (tingling) also my scalp tingles, bloating, irritable , forgetfulness , tired, I also have a twitch (might be stress) about two hours after I eat I feel drunk and my eyes can't focus. So I went to the dr the first time to get my blood results month ago or so and she said I wasn't neg or positive and to not eat gluten if it made me feel better, we'll I wanted a more positive answer so I am eating a sandwhich or toast at least once day so I can get retested which I went in expecting her to retest and she told me no and that if it hurt don't do it that's all I told her my symptoms and I was worried that I might have damaged stuff by eating gluten for basically all my life and I want to make sure she told me that celiac doesn't cause other issues in your body just tummy problems and to simply stop eating it. When she ran my tests she mentioned my liver enzymes being high 76 normal is 65 (I have not drank in atleast 3 years and I don't take Tylenol or any pain meds) I mentioned to her that three years ago when my son was born my husband made me get life insurance and I had to do blood work well they mentioned my enzymes high too I don't remember how high. She said again I am fine but the mentioned one test I don't know what it was but the number was 1.1 and in order for it to be positive has to be above 7 . I said ok the only thing I want to know is why is my hair falling out she mentioned I am nursing my 4 month old and 2 1/2 year old with my first baby I had normal hair loss but this is crazy blading spots. She said that I might be different in vitiamns and minerals but they can't test for it . After I ended up crying because I don't want to leave my two babies if there was something wrong and nobody caught it (my parents passed when I was 18 ) the dr reffered my to a gastologist she mentioned that the dr would yell at her for this Refferal. Now I feel like a crazy balding lady who is going to this gastro dr for nothing. Now what do I do? What's the best stuff to eat? Should I keep a food diary? I am also lactose intolerant which came on suddenly after birth of my first so I avoid also since they both react to milk in my milk. I don't know should I bother going? Or just stop eating gluten

Thank you for reading my confusing novel

Also my husband is navy and we are moving in a few months with a possible year +/- deployment with no family around to help so I want to figure what wrong or suffer till he returns

Thank you again

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First of all, I am sure you will be fine if you do indeed have Celiac. Secondly, she is a bit misleading because it can cause other issues ( cancer, neurological problems, kidney issues, bone brittleness)which is why people should always have an endoscopy when Celiac comes into question. But with that being said, you will be okay.... You just have to make sure you stick with the diet and make sure you have regular bloodwork done to check for vitamin deficiencies and other issues).

Try not to worry... That can cause hair loss as well.

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I would definitely accept the gastro referral, keep eating the gluten, tell lhim you were gluten lite or free when you were tested previously and ask him to test you again with a full celiac panel. Be sure also to tell him about your lactose intolerance and that of your babies also when you drink milk. Be sure to tell him about your liver enzymes and take a copy of those results if you can or ask the doc to send them (if you are military your chart may follow you around??) Make it clear that you want a definite diagnosis because if you should end up with an overseas assignment that could complicate things for you. Stress that the prior testing was not accurate because you were not eating gluten. This is what a full celiac panel looks like:

  • tTG (anti-tissue transglutaminase)-IgA
  • EMA (anti-endomysial antibodies)-IgA
  • DGP (deamidated gliadin peptide)-IgA and IgG
  • Total serum IgA

They need to do all these tests; the last is important to make sure you produce normal quantities of IgA.

As the previous poster said, celiac can do much more damage than just to your intestines - to your nervous system, to your joints, to your brain, to your skin - and it can affect your whole body through lack of absorption of essential nutrients which are necessary for all functions in the body. So you need to be sure that your levels of Vit. D, B12, iron/ferritin, magnesium, zinc have been tested, and also your thyroid function. And yes, a food and symptom log is always helpful.

By the way, child birth is often the trigger for the onset of celiac disease.

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When a doctor is being both dismissive and relaying FALSE information in is time for a new doctor. Celiac Disease has over 300 symptoms - many of which are not GI related. Unfortunately many doctors are neither trained nor have experience with Celiac. It sounds like you may be switching doctors very soon - so for now move onto the GI and hold off on switching primary.

Are you still consuming gluten since you reintroduced it for more bloodwork? (Good plan BTW). It would be best if you can remain on gluten until you see the GI.

I suggest you ask to speak with the GIs nurse and let them know you would like a full celiac panel based on your sypmtoms - preferably before your appt so that the GI can review them with you rather than waiting for a second appt. If asked tell them that your primary refused to run said panel.

Next prepare for your upcoming GI appt. Write down all your symptoms prior to removing gluten, improvements along with new symptoms. It is unfortunate, but you do need to arm yourself with knowledge of symptoms and know ALL the proper tests to ask for - you can not assume even the GI will be up to date with regard to testing or treating celiac.

Hang in there - I understand completely what it is like to be dismissed by doctors - ask as many questions as you like - a lot of folks here can help.

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Im sorry your doctor is giving ypu the run around. You can get a vitamin panel run to see of you are deficent in anything. Also, my liver enzymes were always high, I was told I had fatty liver disease and that I would probably need a transplant in 30 years. I went off gluten amd with in weeks my cholesterol, triglicerides, and liver enzymes dropped. Good luck, I hope the GI is better than the primary.

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