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Everything posted by ravenwoodglass

  1. ravenwoodglass

    Favorite gluten-free flour for cookies 🍪

    Pamela's is my favorite also for things like cookies, cakes and muffins. I like Tom Sawyer to use in scalloped potatoes and such.
  2. Symptoms like that are not unusual at all. Peoples symptoms can vary. Some folks get severely ill from even the tiniest amount of gluten while some celiacs are symptom free even on a regular gluten filled diet or think their symptoms are 'normal' or attribute them to something else. With a brother that is diagnosed it is likely you also are celiac. As mentioned you would need to go on a challenge for about 12 weeks to get blood work done. If you desire a diagnosis a challenge is what you need to do.
  3. ravenwoodglass

    Constant Changes!

    Thank you for your reply. I will check out the Manage Followed Content. Also thank you for once again making the last post visible in the sections. It helps me to see what sections may have new posts in which I might be helpful in replying.
  4. ravenwoodglass

    Constant Changes!

    Two things, one does the format of this board have to change on what seems like a weekly basis? It seems every time I come on I need to get used to a new board. Personally I find it confusing and it discourages me from reading posts and trying to answer questions. Also when I do reply to a query I find my email blown up with other's replies even if I hit the NO to notifications box. For those that have wondered you now know why I am seldom on here anymore. Vent over.
  5. ravenwoodglass

    I'm so frustrated

    You can definately have celiac without either one of those two genes. I am, as previously stated, an example. I have to agree with your husband that celiac can not be firmly ruled out, at this point, by gene testing. What do the doctors say about that elevated test level and that it is going up? What other conditions have been ruled out by testing? Have you had an endoscopy? If so what were the results, keeping in mind there can be false negatives. Have you asked your doctor if he will diagnose you based on symptom relief and a decrease in antibodies on the diet? Being gluten free will not impact testing for other issues. If all celiac related testing is done then you have nothing to lose by doing the diet strictly for a few months. Just be sure no more testing is desired as going back on gluten after being gluten free can be very debilitating if you are celiac.
  6. ravenwoodglass

    I'm so frustrated

    I am someone with an oddball gene. In my case DQ9. Gene testing can not firmly rule celiac in or out at this point in time. Keep in mind celiac is autoimmune not just a GI disorder. Your primary can give you a formal diagnosis based on your antibody levels going down and symptom remission on the diet. Some of those other allergies could resolve in time. My allergist tested me for 99 substances and the only thing I didn't react to was beech trees. After I healed I only ended up with a couple mild true allergies. He said that my immune system was in 'hyperdrive' due to the celiac. After you have healed for a while you can try adding back in items one at a time in purest form possible for a week and watch for a reaction.
  7. Those white matter lesions are likely UBOs or Unidentified Bright Objects. They are associated with antibodies that are attacking the nervous system. There has been research done that is able to be found on sites like the NIH. Don't lose hope, keep seeing your PT and working hard and most of all have patience. I had my first symptoms of ataxia in childhood and by the time I was finally diagnosed my impact was severe. I was misdiagnosed for over 40 years. I healed for the most part but it took being very strict with the diet and lots of PT but within 6 months I could walk unaided and tell you a fork was a fork if you held it up in front of me. It was about 5 years before I finished healing as much as I will heal but I am able to lead a pretty much normal life and was able to finish my degrees with honors (after having to drop back out again one last time). Hang in there.
  8. Welcome to the board. You only need one test to be positive to have celiac. Did they test his total IGA? Some folks are deficient and that would make the IGA test useless. As to the gene testing do be aware that while rare there are other genes that are associated with celiac but they usually only test for DQ2 and DQ8. Gene testing is also not diagnostic as there are many with the genes that never develop celiac. Usually with a positive test they will do an endoscopy. Keep in mind that the small intestine is long and damage can be patchy. A false negative is possible if they biopsy misses a damaged spot. After all celiac testing is done a good strict trial of the gluten free diet should be advised. Do use this time to ask any questions you need about what you need to do when you start the gluten free lifestyle. Also keep in mind that all first degree relatives should be tested for celiac when a family member is diagnosed even if not symptomatic. Good luck, hope he is feeling better soon and that the doctors can give you clear answers.
  9. ravenwoodglass

    Anxiety and depression

    Perhaps the reason they are finding that some folks are showing villi damage after taking antidepressants is because those people are undiagnosed celiacs with a predominately neuro presentation. I had years of DH and severe depression before GI symptoms were more than an occasional issue. I have had no clinical depression symptoms since I healed and had severe reactions to SSRI's as did my children. One became suicidal and began cutting. Both also celiac. I am not saying that folks should not seek assistance with depression or anxiety but the choice of med should be left up to a doctor trained in treating those issues and in carefully monitoring the patients reactions. In addition the OP has indicated that their problem is anxiety and anxiety and depression are not always both present. Only a doctor can tell if he needs antidepressants or anti-anxiety meds. He also is very new to the diet and still healing. The problem may resolve itself with healing and talk therapy.
  10. It could be something as simple as a large gas bubble working it's way through. You can try massaging your abdomen firmly to see if that helps. If the pain is severe and lasts more than a few minutes do talk to your doctor about checking it out.
  11. ravenwoodglass

    Anxiety and depression

    Anxiety can be tough and often help is needed to get through it. Do ask your doctor for a referral to a psychologist who can help you deal. If the anxiety is mainly because of fear of having a D attack while out I found taking a dose of Immodium before I went out to be helpful. If it is a generalized anxiety then talk therapy can be helpful. Your psychologist may decide you need an antianxiety med but I would hesitate to take a med your GP prescribes especially an antidepressant. The reason I say that is because a GP is not trained to deal with that type of issue and you need to be throughly evaluated to figure what med, if any, is appropriate. It can also take a few tries to figure out what med is going to work and some can have bad side effects and not are appropriate for everyone. For example some antidepressents can cause suicidal ideation in young people. In addition although most meds are gluten free there are exceptions. I had severe anxiety and was agoraphobic for years. I finally got help but it took years to face that I needed help. My psychiatrist called pharm companies while I sat there and on the third try finally found a company that had gluten-free alprazolam. Getting that help saved my life. I still take it when I absolutely need it and my pharmacy changed providers for their generics. It took me almost 6 months to figure out that med from that company wasn't gluten free. If I didn't have DH breakouts I would have never figured it out. My doctor called the pharmacey and they got back in my med from my old company. If I was taking it daily I would have known sooner. For many of us anxiety and depression can be a symptom of celiac and will resolve gluten free but for others (like myself) it is a seperate issue. If your doctor, or insurance, will not cover testing for vitamin levels taking a stress level B and C vitamin along with a good multi will not hurt and may help. That with time and healing along with a good psychologist or therapist may help you get through this rough patch. Just don't hesitate to ask for help. It is not a weakness to need help with dealing with a disease. I hope this resolves for you soon. You are very early in the healing process but there is a light at the end of the tunnel.
  12. It is also possible that family has one of the rarer celiac associated genes. In my family it is DQ9 that is present not the usual DQ2 or DQ8. Doctors don't usually check for that one.
  13. Welcome to the board. This condition can be a bit overwhelming at first but we are here to help you get through it. It is best to stick with whole foods at first. Veggies, frozen without sauce is fine, fresh meats, chicken, fish, fruits etc. are going to be safe. You don't need all new pots and pans or dishes and silverware. Just wash them well. If you have wooden utensils or scratched pans replace them along with your colander and toaster. Do you live with others who eat gluten? If so give them or yourself a dedicated space to prepare food. Just think of gluten foods as raw chicken and clean those as throughly as you would if you cut that raw chicken on them. It is a good idea at first to drop dairy products as those are the most common for us to have issues with when we have celiac. Dairy can usually be added back in when you have healed a bit. Just start with things like hard cheeses and yogurt. Healing can have it's ups and downs for a bit so don't get discouraged. Also realize that we have some folks here that have other issues and have to restrict their diets even more than someone with just celiac. Don't let that scare you. Just worry about being gluten free for now. If you need help with recipes or info on anything related to this life change let us know. We have a lot of knowledgeable folks here that will do their best to help. Hang in there. Things will get better and you are in the right place to get the help you need to make the transition as smooth as possible.
  14. ravenwoodglass

    Work holiday party

    I agree that you should go and bring your own food or eat something before you go. As someone who spent years in the food industry (with many as the cook at a place that specialized in dietary restrictions) I can tell you that the caterer has your best interests in mind. The chances of CC are always there when others are preparing food in their kitchens. At least the caterer is being honest with you some would assume that just gluten free ingredients were fine and not take into consideration the precautions we have to take. I hope at the next event you go with the yummyest looking gluten-free dinner and dessert and enjoy the company and the envious glances at your plate.
  15. Call your doctor's office in the morning and tell them what is going on. The doctor can reissue the script and then contact the pharmacy and tell them that you need that med from the maker you used before. It is also possible that she may have something else going on. Having watery D for that long is a concern. You want to be sure it was the med and not that she has food poisoning or something else going on. The doctor may want to see her to rule out other issues. I hope she improves soon.
  16. Dad would be a good idea also. Unfortunately sometimes women are not taken as seriously as men by doctors. One more thing to add...If by chance you are being woken up at night by stomach issues make sure your doctor knows this. We often get labeled with IBS and IBS does not produce this symptom.
  17. What tests did they do and were you gluten free or gluten light when they were done? You need to be eating at least the equivalent of a couple slices of bread a day for about 12 weeks before blood tests if you have been gluten free or gluten light. Celiac damages the area of the intestine that produces the enzyme needed to digest dairy so dairy will produce issues in most of us. As to the blood if, as you say, you are just seeing a bit of blood on the tissue then it is likely hemmeroids (sp?). We can have them both internally and externally and a bit of blood from them is nothing to be overly concerned about. If you are actively bleeding and turning the bowl water pink then if your doctor won't do a colonoscopy you need to find a new doctor. If you are actively bleeding (as if you had your period) IMHO that would be an emergency and a trip to the ER while it is happening would be in order.
  18. It means that, like myself, you have one of the rarer celiac associated genes. Welcome to the board and the 'club' you never wanted to join. Do be sure to read the Newbie 101 thread at the top of the Coping section and feel free to ask any questions you need as we have a lot of very knowledgeable folks here that can help. Be sure also to encourage all 1st degree family members to be tested even if the don't seem to be having symptoms.
  19. ravenwoodglass

    Cross Contamination and Depression

    Yes gluten can cause serious depression and suicidal thinking and even actions. After CC I get 24 hours where life does not seem worth living but I am able to fight it because I know that the feelings are being caused by being glutened and will lift. I didn't have that knowledge when the first episode of gluten related depression hit me hard at age 11. I had to be brought back in the ER and spent days in intensive care with the doctors telling my Mom I would never wake up and would be brain damaged if I did. I did wake up and was okay but it would be many years before I would know that the dark hole was due to gluten. I am telling you this because this kind of depression can lead to more than just the suicidal thoughts he is experiencing it can lead to action even in young children. Please make sure that all is being done that can be done to keep him safe. There are more risks than just food and this can make many things commonly used in preschools very hazardous for him. Paints, playdough, pasta necklaces, glues etc can be a source of CC. You need to make sure that care is taken in school to keep him safe. Talk to his teachers so you know what projects are being done and you can bring in safe alternatives like gluten-free pasta for that necklace or safe modeling clays and paints for his use. Do talk to the GI and have those panels rerun. Your GI may not be aware that celiac can have this effect so don't be surprised if you get an 'eye roll' reaction when you bring it up. Also see if there are any counselors that deal with children. They can help him understand that the suicidal feelings he is having are because of his celiac condition and will pass. Be extemely cautious of any doctor that wants to medicate him for depression. The key to fighting gluten related depression is being very strict with the gluten free lifestyle. I know how hard this is to deal with as a parent. Both of my children are celiac and one had the same depression issues I did as a result. A counselor may also be able to help you help him deal with those feelings. I am so sorry you are having to deal with this but please don't take his suicidal ideation lightly. It is rare for children to act on those feeling but it does happen.
  20. You stated in your first post that you had both positive blood work and a strong positive on your biopsy. Why is your doctor wanting to redo the testing? Being gluten free will not impact testing for other issues and glutening for 6 weeks may not be long enough to produce positive blood antibodies. I would think redoing biopsies to see if your villi have healed is reasonable and retesting for antibodies to make sure those are going down would be more appropriate. Make sure that your new doctor has full copies of your records for past tests and results and carefully consider whether you want to risk excaberating problems with a challenge. Some of us can have severe reactions to a challenge so if you do decide to do one make sure your doctor will get you in immediately if you react very badly.
  21. ravenwoodglass

    Glutened By Garlic Powder? Say It Ain't So!

    McCormicks single ingredient spices are what I use. I also will get Wegman's mixed spices if they have their circle G. I put their Garlic and Herb blend in almost everything from meats and eggs to veggies. I know it is expensive to replace all your spices but if you have used a lot of generic ones I would to be on the safe side.
  22. That is not a for sure that you are not celiac. There are more than just the two most common genes that are associated with celiac disease. I am very thankful that I was diagnosed before gene testing became common. I would be dead by now. I am a double DQ9 and that gene was just discovered to be associated a few years back. By low dose immunotherapy are they talking about the therapy where small doses of the allergen are introduced into the system in an attempt to make the person less sensitive to the allergen? I hope whatever therapy you are doing is able to help you. IMHO you should also be very strictly gluten free. Celiac can send the immune system into hyperdrive (My allergists term) and cause false allergy reaction. I was allergic to 98 out of 99 substances when I was tested. After a few months gluten free only a couple mild true allergies remain.
  23. ravenwoodglass

    My world of confusion

    Welcome to the board. All you need is one positive blood test on the panel to have celiac. You had that positive. How many biopsies did the doctor take? At least 5 or 6 should have been taken from different areas of the small intestine. Damage can be patchy and easily missed. Doctors sometimes miss that the inflammation and other signs are also indicitive of celiac and won't diagnose unless the villi are fully gone. You are celiac and you need to get back on the diet strictly. Do be sure to read the Newbie 101 thread at the top of the Coping section. It has a lot of valuable info to help you stay safe. I hope you are able to heal quickly. Ask any other questions needed as there are a lot of very knowledgeable people here to helpin any way they can.
  24. I don't know where the person answering the pepperoni and gluten question is getting their info but it is wrong. I have found it to not be common to find gluten in prepackaged processed lunch meats, some are even labeled gluten free. If you live in the US wheat must be labeled if it is in an item. There is a risk of cross contamintion if you purchase some at a deli. Do ask your ped to test your daughter and don't take anyone gluten free until you test.
  25. You have gotten some good advice already so I don't have much to add. As far as how much gluten to eat before testing you need to consume a slice or two of bread or a couple servings of a gluten food for about 2 months or so before blood work. They say 2 weeks is enough before an endo but most doctors will not do an endo without the blood test first. Talk to your doctor they may be able to give you some medication to make the challenge a bit easier. An allergist would be a good idea since you are having some symptoms that could be an actual allergic reaction. My allergist was the one who finally figured out I was celiac and sent be back to my GI for a formal diagnosis. When he did skin prick testing out of 99 things tested for I only had one thing I didn't react to...beech trees LOL. After some time gluten free almost all of my allergy reactions went away. He said my immune system was in 'hyperdrive' from the celiac. Also it is doubtful that there was any gluten in the pepperoni itself. It was that you took it off of a gluten pizza that would have caused a reaction. If it was Hormel pepperoni it was for sure safe. I eat it at least once a week and I am very sensitive. You should look over the Newbie 101 thread at the top of the Coping section. It has a lot of good information on what you need to do to keep yourself safe. A challenge won't be easy if you are celiac but it is important to get diagnosed as you have children and celiac is genetic so they would need to be screened for it also whether they seem to be having symptoms or not. The antibodies can impact the brain and nervous system and make issues with mood and learning before GI symptoms become a real issue.