I am desperate!!!! Please help me! sorry long.

[Shay]

Hi everyone. I had posted a long time ago but need help again. I will try to make this short. This all started after my first baby I started with dizzy symptoms to burning sensation all over my body and almost fainting. I have had way more symptoms over a year but basically no doctor has found anything and wont take me seriously. The ONLY thing they have found is hashimotos. Low thyoid autoimmune disease. Also very low ferritin(iron). I went to my doctor weeks ago and my blood tests and levels are improving now that I am on vitamins and thyroid meds. I am also 15 weeks pregnant again and really scared. when this all started a year ago I lost so much weight i am very thin. Also my mom does have celiac disease.

THis is what has been happening the past few weeks. I was gluten free for 2 months or so and not feeling as bad. Still not great but better. I started eating gluten again the past few weeks because I am starving and pregnant. Couple days ago the severe weakness and fainting feeling is coming back again and yesterday it was full blown. HERE are myu symptoms please tell me what you think??

-Body weakness
-all food I cant stomach and no appetite
-nauseous
-lightheaded, dizzy, my eyes get dizzy and i feel like I cant focus
-so close to fainitng but has not happened yet
-tingly burning feeling in body
-nervous
-cant stand for long time or focus or I get dizzy
-my face gets blotchy and rashy quite a bit especially around mouth and chin
These are some of the main ones that are really freaking me out. Is my body going crazy because of the gluten again??? I know I am pregnant and some of those symptoms sound like pregnancy but I KNOW they arent and wouldnt last this long and get as bad as they have been in a year. I am so sorry for the long post I am really freaked again and I need help or advice. PLease reply if any answers for me or questions. The doctors wont listen to me and I have been a walking mess for over a year trying to be a mom. THANKS

[M. Shac]

Shay, You are not going crazy! Have you been tested for Celiac disease? I know that you said that your mother has Celiac disease but have you had it confirmed that you do have it? If your mom has it, more than likely you do to. The symptoms that you have mentioned do sound very suspicious of celiac disease. Do you have a GI specialist that is knowledgeable of Celiac disease that you could go to? I know that you get worried about what to eat but if you do have celiac disease you need to be on a gluten free diet, that is why I asked if you have been tested. Do not allow the Drs. to make you feel like it is all in your head. I felt the same way that you feel, but I found a wonderful Internist who diagnosed me without much effort when I had been to several Drs. for many years who could not put their finger on the problem. She knew within five minutes of being in her office, what the problem was. Do not give up. I will pray for you to find the right Dr. to go to. Ask the Celiac association if they know of a specialist in your area. There are wonderful people on this site who are more that happy to help you with food suggestions, support, recipes, etc. We are here for you!

[aklap]

Hi Shay,

Welcome back!!

With the Hashimoto's and low iron (and all the other symptoms you describe), I would make an appt with your doctor to get tested for CD tomorrow!! If your current doc won't listen to, see if there is another doctor you can see. Maybe your Moms? Since she is already dx'ed - her doc maybe at least open to the fact.

Yes, your levels maybe improving by taking supplements, but it's really not finding the root of the problem - which maybe CD. Since I have never been or ever will become pregnant, I can't tell you if any of the sx's are related to pregnancy.

Since you have a family history, the rest of your family needs to be checked as well. Be aware...if you test negative now...this does not clear you for life. You (and other family memebers) should be checked periodically.

Along with the celiac panel, other items should be checked. Vit. E, Vit. D, Vit. K, Iron, Vit. B12. (I'm sure there are some more that I'm forgetting). Many times these levels are not checked and should be requested.

Good luck in your knowledge quest. Please, keep us updated!!

A complete Celiac Blood Panel:

antigliadin IgA and IgG (May indicate Non Celiac Gluten Sensitivity)
anti-tTG and/or anti-endomysial (Looks for villi damage)
total serum IgA (rules out IgA deficiency)
anti-reticulin IgA (Rarely used but, a very thorough doctor will include this)

More on Diagnostic Testing
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Shay]

Thank you so much for your replies. I actually did have a blood test for Celiac the IGA one or whatever and it was negative twice. One time I was barely eating gluten. I have been gluten free again for 2 and going on 3 days so I am hoping if this is my problem I would slowly feel better every day. Yesterday was horrible. I had burning prickly inside my body all over. I feel so weak and mjust not well at all. I have not been this bad in a long time. I should of never went back to gluten but it is hard when I dont know if I have or not. Trial and error I guess. Do these symptoms I have mentioned sound at all like celiac?? I feel like I am dying and it is horrible. I know they are not pregnancy related symptoms. I am sorry I seem like such a scardey cat but I am pretty worried this has been on and off for a year and i thought it was finay getting better..............