This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Tirosint is the only gluten free T4. I am a celiac and I take it without any problems. None of the other T4 compounds are gluten free - especially synthroid. Also, a compounding pharmacist can compound T4 and T3 for you with a Drs Rx.
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.
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.
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.
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 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!
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!
I love this entry. You have an attitude of healing. The statement you made, "If it is as simple as modifying my diet, I can do that" should be given in bold letters by doctors to everyone diagnosed with celiac or gluten-intolerance with credit given to you. We are told by everyone how difficult giving up the food that hurts us will be. When I was told that I thought "what could be hard about giving up sickness"?
Anyways thank you for the laughs - TV/DVD in the bathroom - and being so upbeat.
I read your post and could certainly identify with you. Thank you for trusting us enough to share your feelings. I know just having a place where you can say how you feel must have felt good.
I often say that family friends get tried of us being sick because as far as they are concerned there is no end in sight. What they fail to realize is that good health is on the way. The most difficult part... getting the diagnosis is behind you. You will still have daily challenges, but as soon as you get the proper diagnosis for the damaged caused by years of nutritional deficiency the best is just around the corner.
With God, a gluten-free diet, proper nutritional support and emotional support from other celiacs you will live a better life than most of those who are not as fortunate as us to know what foods are hurting us and how to heal our bodies.
You started your post with "This has been an incredibly hard journey!" I said that too. In 6 months I would venture to say that you will be saying, "This has been an incredible journey!"
The day I was officially diagnosed, I skipped happily out of the doctors office with the best prescription I never had - a gluten-free diet!
It was trying navigating the diet, however, enjoying good health was indeed a sweet reward for those early days.
Be encouraged and focus on you, even when no one else does. Cheer yourself on, pat yourself on the back, hug yourself when you need a hug, and always believe in "you".
Johnny Patout, a licensed social worker who facilitates a celiac emotional healing support group in Louisiana says something that is powerful and enlightening that I would like to share with you.
He says, "It's impossible to place, or to know, the value of that which has not happened." For instance, none of us know what worse fate may have occurred had we not had to deal with the challenges and obstacles placed in our lives.
Soon you will see the blessing this challenge really is. Take care.
I've never heard of a dual Graves/Hashi Dx. I have Hashi. Besides hair loss I feel great. I attribute that to taking vitamin D3 and getting my iron issues resolved. My oncologist started me on EZFe iron supplement. It is incredible. I would suggest that you take a soy-free D3 (Premier Research Labs), soy-free Omega 3 (no omega 6 or 9), vitamin C.
So sorry to hear of your difficulty. Take a deep breath... you are going to get through this. I would suggest that you try doing a salt water flush. http://www.healthbeyondhype.com/pink-salt-p-64.html. Here is the link at the website Healthbeyoundhype.com. The salt cleanses the entire digestive system, something an enema won't do. Keep doing it until you get some relief.
Aloe vera juice which is gluten free helps with constipation as does Magnesium Glycinate. Good luck to you.
Stick with the gluten free diet - it is the key to health. Focus on the gluten-free choices that do not come in a box or bag. You have the pick of the liter - fresh vegetables, fruit, grass-fed meats, seafood and the water you can stand. Go easy on the fruit the sugars exhaust our adrenal glands. You can do this.
Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
The support group is free and open everyone managing celiac disease. For more information: firstname.lastname@example.org
Sorry to hear that you have Hashimotos. I refer to mine as the DEVIL. However, you can live well with it, I am .
Don't stress about it. Yes, that is easier said than done. Read the book by Dr. Datis Karrazhian. I have the ebook and will forward it to you if you like- just email me.
Also, if you decide to go on a T4 replacement don't get on Synthroid (not gluten-free). Request that the Dr. put you on Tirosint. It is in a gel capsule (no dyes, no fillers) and easy to take. If you are still consuming soy -- stop it! Only consume fermented, non-GMO soy which is only found in tempeh, natto, miso and soy sauce (gluten-free). Otherwise what we eat in the USA is harmful to our health. Watch for soy in vitamins, canned and frozen foods, candy, ice cream, supplements, vit D3, tuna, mayo. It is everywhere. Soy destroys the thyroid.
Good luck to you. You will survive this - I promise!