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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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Hi... Newly found to be Celiac probably since very young age. Was on thyroid meds at 10. Allergy to multivitamin at 10 (hives)... severe allergies. Gluten being one. Dr.'s. thought text book case, couldn't figure it out. Finally severe reaction to food very recent (3 weeks ago) diagnosis made. Now it's very clear minute amounts of gluten are triggering major reactions. Being very cautious. Reading every label. Had salad tonight, just chicken plain broiled, only added small amt. shredded cheese, gluten free dressing. Had coffee, small amt. half and half. Thought all was fine. Having severe itching even with Benedryl. (dye free) Cutting out cheese and cream next. I will now stick to pure soy powder, soy milk, frozen fruit shakes 2 x a day and fresh veggies/fruit and nuts, chicken or fish and gluten free rice. Have gluten-free vitamins, medication list and a few resources. Taking Prilosec for small intestine discomfort, have had severe migraines since 1998 and take Topomax and have Imitrex or Relpax prn. Getting blood work done next week. Very weak due to the longevity of this illness and not knowing until now. Hoping diet, rest, vitamins will get energy back soon. Any advice or information would be greatly appreciated. Thank you.

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Welcome!

It sounds like you have had celiac disease for many years. You are recently diagnosed (did I correctly understand 3 weeks?).

Your body has sustained considerable damage during the time that you had celiac disease, but were not aware, and did not follow the gluten-free diet.

It will take time to heal your body. Months at least. In long-term cases like this, it can be two or three years. While your body is healing, it is still damaged. You may experience random reactions to food that have absolutely nothing to do with eating gluten. You just haven't healed enough. Spicy foods, fatty foods, dairy foods--all of these can cause a reaction during the healing phase. Don't assume that every reaction is caused by gluten, although it is a possibility.

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Thank you Peter, it is nice to be here, and thank you for your quick and kind response. I was diagnosed one week ago, but have pretty much known for the three weeks since that major reaction. That surely is a long time to heal, although I am greatly relieved that I can... considering how long I've gone without being diagnosed.

The information you provided was very helpful to me. I can relax now knowing that these reactions aren't from gluten alone. It was quite alarming and stressful to say the least. This has been very helpful. Thanks very much once again. :)

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If you have not yet had blood work done to confirm the celiac diagnosis you should do so as soon as possible, like tomorrow!! It sounds like you have already been mostly gluten free for three weeks and the antibodies disappear from the blood stream quite quickly in the absence of "normal" amounts of gluten. Same goes for the endoscopy with biopsy if your doctor wants to do this procedure to confirm - the intestines start the healing process quite quickly although as Peter says the entire process could take from months to years. But to give yourself the best chance of diagnosis you would need to keep eating gluten until the time of the biopsy, as painful as that might be. But many believe the biopsy is not necesssary, so at least get the blood test right away before all your little antibodies disappear :unsure:

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I would just like to add to the discussion that many of us with celiac cannot tolerate soy. You mentioned that you'd like to keep that in your diet....but you might wish to rethink that.

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Thank you for the feedback everyone. I have three grown daughters one of which is married. All have lactose intolerance as I do so I am hopeful that soy is going to remain a positive (I sure need the calcium). You can assume I have had this a very long time. I guess I am a bit in shock so to speak. I feel incredibly lucky too. Thankful to still be here and thankful to be here receiving help from great folks!

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In our extended family we had what we thought was a predisposition to lactose intolerance and various other allergies. We also have thyroid problems in the family too. It took 20-30 years for all those lactose-intolerant people to be diagnosed as celiac (all of them without exception!). Please encourage your daughters to be tested too. If your diagnosis is confirmed, which seems likely, you may wish to remind doctors that even if your childrens' blood tests come back negative, they ought to nevertheless consider proceeding to endoscopy, given their family history and their lactose intolerance. Have your doctors also planned a bone scan for you to check for osteoporosis? This is very common in those who have been undiagnosed for a long time.

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In our extended family we had what we thought was a predisposition to lactose intolerance and various other allergies. We also have thyroid problems in the family too. It took 20-30 years for all those lactose-intolerant people to be diagnosed as celiac (all of them without exception!). Please encourage your daughters to be tested too. If your diagnosis is confirmed, which seems likely, you may wish to remind doctors that even if your childrens' blood tests come back negative, they ought to nevertheless consider proceeding to endoscopy, given their family history and their lactose intolerance. Have your doctors also planned a bone scan for you to check for osteoporosis? This is very common in those who have been undiagnosed for a long time.

Thank you UK Gail. I have had my suspicions. My oldest daughter has a thyroid condition and was being treated but was allergic to the medication. I will follow up with her. Your information is most valuable and brings up some very important points which may help my family greatly. Thank you. I will encourage them to be tested. My doctor is not qualified to really help me through this process and I need to find another I believe at this point. Most of what I have discovered has been through other professionals and brought to her attention sadly. Thanks again for your very valued information. :)

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Hello and welcome!

I would echo all the wonderful advice you have received already--especially in regards to giving your body time to heal. For those of us who go long Un- Dxed, it may take years to heal. Do not be discouraged by that thought, though--it gets better and better!

You may wish to avoid dairy and soy for now. Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi. When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again.

I find it no coincidence that family members are "lactose intolerant" and have thyroid issues. These conditions often go hand-in-hand with gluten intolerance/celiac. My many extended family members have those issues, too! For what it is worth, my hypo/hyperthyroid fluctuations and lactose intolerance and long time GERD and "IBS"--have all resolved. It was the celiac/gluten all along.

Soy affects estrogen levels and if you are concerned about calcium intake, try So Delicious Coconut milk. It has MORE calcium than cow's milk, should be easily tolerated and perhaps in time, you can add dairy back into your diet without suffering any symptoms.

I use it--and the coconut creamer and "ice creams". Very tasty! I now tolerate cheese on occasion and half and half in my coffee and yesterday, I ate Haagen das ICE CREAM (yaay!) :)

Best wishes and I hope you start to feel better soon! Keep us posted!

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Thank you so very much IrishHeart! I will try your suggestions as they make very good sense to me. I have heard about the coconut milk even before Celiac and Gluten just when trying to deal with digestion and discomfort so this is a definite yes for me. I'm smiling now and feel some hope today for the first time in so long I can't even convey. I have memories from my 20's of telling my mom that I felt like I had "leukemia" that is how weak and drained I was feeling 25 years ago. With all the help and advice and good changes, it can only get better from here. Very grateful. ;)

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Good afternoon, I wondered if anyone might know of an over the counter product that is gluten-free that might be soothing to the stomach/intestine that I am not aware of... I have tried most products and find I react to almost every type and every brand. Hoping maybe someone might have already been down this road before. Thanks :unsure:

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Sorry, there are no quick fixes. When I first started out, I quickly found that plain, homemade soups (with meat broth or stock and veggies) were the most soothing thing to eat. For a while I couldn't handle anything fatty, and just stuck to soups, slow cooked plain casseroles, and grilled meat and boiled veggies. Go very easy on gluten free baked goods until you feel better. For me digestive enzymes helped a lot. Probiotics were also a big help. Maybe some multivitamins too if you are deficient in anything, which is likely, but don't add too many supplements to your diet in one go, do it in stages to give your body time to get used to them.

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Sorry, there are no quick fixes. When I first started out, I quickly found that plain, homemade soups (with meat broth or stock and veggies) were the most soothing thing to eat. For a while I couldn't handle anything fatty, and just stuck to soups, slow cooked plain casseroles, and grilled meat and boiled veggies. Go very easy on gluten free baked goods until you feel better. For me digestive enzymes helped a lot. Probiotics were also a big help. Maybe some multivitamins too if you are deficient in anything, which is likely, but don't add too many supplements to your diet in one go, do it in stages to give your body time to get used to them.

This was the same for me too. Slow and simple is the way to go when you are dealing with a long term sick body like ours.

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BTW there are only four products I can tolerate that come in packets: rice, rice noodles, rice crackers and one brand of sweet biscuit that is gluten/corn free and all natural sweetners etc. Taking gluten, egg and corn out off my diet has been a revelation to my system! Months of experimenting but worth it in the end.

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Welcome to the board! It sounds like you may be dealing with allergy issues in addition to possible celiac complications. We have found it necessary to work with a team of doctors because we have been unable to find a single doctor to manage both our allergies and our celiac. I did find conventional allergy testing helpful, although it was a difficult experience. We have found that Zyrtec (generic cetirizine too) works well for us as our primary antihistamine, and we find an effective antihistamine very helpful in managing our allergy complications as we also manage the celiac. We have found a diet of simple, whole foods to be the easiest way to root out all of our complicating issues, and we found that a gluten, dairy and soy free diet was the basic first step for our family. We have used rice and nut milks as our dairy substitutes, but we have also had to take great care in those foods to investigate if they as gluten free as our family requires.

Good luck in figuring out your puzzle! It has been quite a process for our family, and it certainly has helped us to reach out to support groups as we have tried to decipher our celiac and allergy issues.

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You may also want to check out catsmeow posts about introducing Zantac to help with her wheat allergy. We have found it helpful to work with a doctor group that specialises in gluten intolerance, in addition to our other doctors (as they each seem to figure out different pieces). The gluten intolerance doctors were able to identify a complicating infection for one of us, and we have been very pleased that they seem to have been able to expedite our healing in this process.

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Thank you all for your very generous replies. I am just now reading and will respond in the morning. Very grateful. :)

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Weluvgators is quite right. I overlooked this aspect of your posts. I haven't had allergy testing done yet, but am finding that zyrtec (in liquid form, which is lactose free) is very helpful in reducing the severity of symptoms, whether it is just addressing the minor daily aches and pains and sinus issues, or the extreme nausea and vomiting of a glutening. It seems to help with both. Zantac helps too. I find the latter is better if I have acid pain in my stomach (which is now unusual for me), and zyrtec better if there is no acid pain.

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am finding that zyrtec (in liquid form, which is lactose free) is very helpful in reducing the severity of symptoms

Ooohh, thanks for sharing this note. I have been using liquid only because that is what we always have on hand since I am dealing with kids. I recently got tablet form because it seems easier to always keep it in my purse or to just carry it in my pocket (so much smaller!) . . . but I have not yet trialed the tablet form. I also appreciate that I can do smaller dosing with the liquid form, as that is usually enough to get me over the edge of a reaction (we use it for respiratory/asthma and skin reactions, including itching).

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Antihistimines are immune suppressants. I started using Claritin Childrens Chewables in January when I was getting allergy symptoms and it was a miracle drug - antihistimines hadn't ever worked for me before. I guess going gluten-free helped clear the way. Anyway, told my ND and she replied with the above - since i was apparently in an autoimmune flare, I probably felt a lot of ancillary relief.

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WELUVGATORS Thank you for the kind welcome! I have had many allergies from a young age. Does complicate things. Though knowing the gluten sure helps with this puzzle tremendously. Thank you greatly for the antihistamine suggestion. While I am allergic (of course) lol to Zyrtec itself, I'm sure there is another (like Allegra) I might explore. I found it mind boggling that I became allergic over time to Benedryl for allergies (because of the pink dye. Thankfully they do have the dye free. Zantac, through trial and many errors I can take some forms and some store brands of that type of product if white. Thank you for that reminder :)

I want to thank everyone for every suggestion no matter how small it may seem. It is not. I have made major changes and have had two serious days with no reactions. A break through the Topomax migraine, guessing due to change in drastic diet and stress so got some Imitrex and I'm fine now. Pain in side is much subsided and not acute and I feel very hopeful and grateful to everyone. I set my sights too high as far as energy and had the rug pulled out from under me this weekend, disappointing friends and myself so I cried a lot but realizing time is the only answer. For the most part I am thrilled and hopeful with moments that are tough and grateful to have met such wonderful people to know I can find help to get through this. Right now I do not have health insurance so I'm not as lucky as most and it's scary. Thanks again for everything. Have a great week everyone. :)

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    • celiac disease is psychosomatic
      The letter I am suggesting has nothing to do with the doctor.  I would type it and walk it to the desk when are in the building for your other appointment. 
    • celiac disease is psychosomatic
      Thanks. I'm not sure if the doctor will read another email I send and that's the way I'm told by staff to contact her. It will just confirm that I keep writing her letters although I only sent her one email about it! I already told the staff and her that I didn't want my medical records sent to any doctor's office, but I don't know if they will do it out of spite. It was scary talking to this doctor because she wouldn't listen or let me get a word in...I guess that's the reason why I feel the need to raise my voice at this office. When I requested a Lyme disease prescription from another doctor years ago before I knew I had celiac disease, this ignorant doctor told me not to come back to his office because there's no such thing as Lyme disease so only crazy people think they have it. I thought that was the worst experience I had with a doctor, but this experience was worse. I mean this neuropsychiatrist kept calling me a sick person over and over. It's so scary dealing with doctors like this. I really don't know how many other doctors may have wrote in my records that my symptoms are all in my head because celiac disease isn't real.   And my neurologist said this neuropsychiatrist was great. Maybe he says that about all the doctors he refers to patients to? I don't know if you call her personality psychopath since she appeared really nice during my consult, but she was thinking all this negative s*** in her mind at the time or different than she appeared to be.
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