kennedymoore

Hellopixies90,

I just want to add that you can find comfort on this site by just having someone to talk to who cares about you and understands.
Like so many celiacs I too don't trust doctors. It took me 12 years of seeing doctor after doctor and getting no relief. Even when I could not walk, had to close my business, could not drive, and was from a wheelchair to a cane, totally bedridden I was told it was all in my head. Well, it was actually in my stomach!

I think that we know our bodies better than any person with MD, Phd, LCSW, behind their name. Trust what your body is telling you. You might not be able to go totally gluten free but you can make the choice to not eat wheat, barely, rye and oats.

However, you should not eliminate gluten from your diet before you get tested for Celiac Disease.

Get tested as soon as you can. It would help you to know your diagnosis. Second, with a diagnosis your family my be more supportive. But if they are not don't let it worry you. Lastly, the disease often causes anemia, Vit. D deficiency, thyroid problems and more. You need to know what deficiencies you have and what if any other autoimmune diseases you have so you can manage those. So you need to ask for a CMP, CPK, CBC, Thyroid Panel, Vit D levels, Iron Panel at a minimum in addition to the Celiac Panel. A gastroenterologist, a good hematologist and/or a endocrinologist can run all of those when Celiac is suspected.

Doctors do have their place in our care. I only go to the doctor for testing to help me manage my thyroid, vit. D levels and thyroid. Other than that they are useless to me. Doctors don't know how to make you well, they know how to write prescriptions. They are not trained about Celiac Disease because their is no Rx to write for it, therefore, they are not getting any training from the pharmaceutical companies about it.

Remember, because they are relatives does not mean they have our best interest at heart. Relatives can do more harm to you, because you trust them and expect that they will care for you. Trust yourself and God. Sweetheart, you can survive this and get better.

The best of luck to you, you are in my thoughts and prayers.

Take care of yourself.

I have been trying for a while to make the connection between celiac disease, EBV, CMV, Parvo B19, Low Red Blood Count, Low Hemoglobin, Hematocrit, Low MPV. Bingo - there is a connection. With IV iron and the new oral iron EZfe my Hematologist got my ferritin to almost 300, total iron over 82. I still feel rotten and my hair is falling like crazy. I have had EBV, CMV, Parvo - no active infections. My immunologist said past infections affect you like they are active. Of course he said to rest, rest, rest and don't allow stress in my life. I also have lupus and hashimotos.

... let me get back to the point.

I agree celiac either triggers the viruses or the viruses trigger celiac. For me I believe my viruses triggered celiac. I have been anemic all of my life. I think now that my anemia is Aplastic.



I found an article about it at the link below. I also cut and pasted some information about causes.

http://www.nhlbi.nih.gov/health/health-topics/topics/aplastic/causes.htmlAcquired

"What Causes Aplastic Anemia?

Damage to the bone marrow's stem cells causes aplastic anemia. When stem cells are damaged, they don't grow into healthy blood cells.

The cause of the damage can be acquired or inherited. "Acquired" means you aren't born with the condition, but you develop it. "Inherited" means your parents passed the gene for the condition on to you.

Aplastic anemia is more common, and sometimes it's only temporary. Inherited aplastic anemia is rare.

In many people who have aplastic anemia, the cause is unknown. Some research suggests that stem cell damage may occur because the body's immune system attacks its own cells by mistake.
Acquired Causes

Many diseases, conditions, and factors can cause aplastic anemia, including:

Toxins, such as pesticides, arsenic, and benzene.
Radiation and chemotherapy (treatments for cancer).
Medicines, such as chloramphenicol (an antibiotic rarely used in the United States).
Infectious diseases, such as hepatitis, Epstein-Barr virus, cytomegalovirus (si-to-MEG-ah-lo-VI-rus), parvovirus B19, and HIV.
Autoimmune disorders, such as lupus and rheumatoid arthritis.
Pregnancy. (Aplastic anemia that occurs during pregnancy often goes away after delivery.)

Sometimes, cancer from another part of the body can spread to the bone and cause aplastic anemia."

Does this make sense? Any thoughts? And, where do we go from here?

I love this forum. I was getting my grocery list together, checking the sales and matching coupons when I saw BB on sale and thought.... I could have this around the house as a treat for me and my boys. Then I decided to double check in the celiac world to make sure no complaints. So, So glad I found this. I would have checked at the store but it helps to have a leg up from trusted sources.

Thanks for just posting your experience, you are making a difference in other's lives when you do that.

I've been struggling for quite some time now with what seems to be an increased sensitivity to gluten. When I was first diagnosed about 5 years ago as non-celiac gluten sensitive, I responded incredibly well to a less than perfect gluten-free diet.  That lasted about 1 1/2 years and then I started having problems again. My symptoms are and always have been intestinal distress and diarrhea and the depression that goes along with not feeling well.  I have had some success by getting away from processed gluten-free foods and taking more precautions in a very gluten filled kitchen that I share with my family of five. I have not been able to bring myself to make our house gluten free due to not wanting to put my family through that. Any success that I have seems to be only temporary and then things get worse again. Have any of you gone through feeling better,  getting sick again and then finding your way back to wellness? If so, I would love to hear your story.  I welcome responses from everyone but am particularly interested in hearing from non-celiacs since genetic testing has my doctor pretty sure I am not celiac.  Blood testing was negative for celiac, but an Igg score was 84 when anything above a thirty was positive.  Never got a biopsy prior to gluten-free diet. The blood work was done prior to gluten-free diet, resulting in the initial diagnosis and prompting the gluten-free diet.  The genetic testing was done fairly recently. Sure could use a mentor who has already been down this road. Taking some fairly radical precautions and still not staying well has me feeling a little discouraged.

I actually have celiac disease and I don't believe that the reaction to gluten is any different in celiacs than those who are non-celiac gluten intolerant. The obvious reaction to gluten is what most people focus on, however, because exposure can be "silent" you are still damaging your precious body. I would turn my entire kitchen and house gluten-free and not think twice about it. I have a 12-year old who does not have celiac disease but was delighted to join me on our new lifestyle. Gluten-free was the best Rx I never had. Make the transition simple: meat, seafood, fruit, vegetables, soaked seeds - all you want. You can eat well without eating anything from a box ever. Good luck to you and your family. A new life of wellness, happiness, challenges and victories await you.  One day you will look back and say "living gluten-free is the easiest thing I have ever done in my life" I know I did!

I would drop all Bobs Red Mill products.  I am one who reacts to gluten free oats and I react to all BRM because of the gluten free oat contamination. Last Jan. I ate at a dedicated bakery that used BRM products.  Ugg..I reacted terrible!

Thanks for posting that about BRM. I just purchased two of their products, one being the chocolate chip mix. I had already decided to return it because it contained soy. I have Hashimotos too and SOY is out for me. No one should consume soy unless it is fermented (my opinion). Now I am returning all of their products. Great tip!