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39 Comments

  1. 1

    Barbara S. Bearden

    Just an FYI, I was put on a Fodmap Diet, it was hard to do, I also gave up gluten, diary, sugar, & I drink only filtered water with lemon. I don’t drink sodas or juices, if I go out, I have water with lemon or unsweetened tea. I lost weight & felt much better after being on the diet. I eat very little meat, very little processed foods. I took my doctors advice, if it has an expiration date on it, don’t eat it, eat the type of food that is fresh & will spoil when not eaten. :)

    Reply
    1. 1.2

      wheatfreeeee

      I could’ve written this!

      Also good thing to note is “no dairy” also refers to dairy included in prepared foods! Found that out the hard way!

      Reply
  2. 2

    C-Girl

    “Sick in her throat”? Could it be in her esophagus? I had terrible pains in my esophagus until I gave up dairy.

    Reply
  3. 3

    Michele

    My son has celiac. It took about 3 months on a gluten free diet as well as taking an iron suppliment (as most people first diagnosed generally have to do) before he could get up off the couch and go back to school. As well my girlfriend who has celiac was not thriving and the doctor tested her blood and found not only was she low in iron but also in folic acid and B12. Her doctor said that celiacs should all have their blood tested for vitamin deficiency’s.

    Reply
  4. 4

    Jewel's Bakery and Cafe

    She needs to do gut repair also. Acid reflux is also a byproduct of the fun disease. Tums and probiotics! Probiotics with a coating to make it past the stomach. But repairing the gut after all the damage is key. It has been deceived to me that it’s like a sunburn damage and it take time and certain things to calm and heal it. Look up gut repair and you may find some herbal teas that soothe and some herbs that help heal. And like they said they cut out dairy and other things. She may be reacting to other common foods from having leaky gut. The damage to the walls of her intestines can allow small bits of food to exit. That will in turn, turn on antibodies against those foods since they don’t belong out of the intestines. They are seen as forgein bodies. That may I turn make her have reactions to those foods. We saw a naturopath to determine what foods were reacting after my daughter went gf. She was allergic to 4 more things! With eliminating those 4 and gut repair she was able to eat all those foods again! It took over 6 months.

    Reply
    1. 4.1

      wheatfreeeee

      Is tums a good idea as it will affect stomach acid?

      Reply
  5. 5

    Vera

    Totally agree Dude! Eliminating Dairy and Soy are important, and most forms of Corn, especially the GMO/non-organic variety. If she’s going to replace pasta, rice/quinoa varieties are preferable over corn. I would also suggest starting her on a non-dairy probiotic, like Culturelle. It’s pricey, but could do a world of good. Trying fermented pickles and sauerkraut might help too — my kids her age love them. “Sick in her throat” might signal mast cell activation issues, another possibility worth exploring. But healing takes time, especially since gluten antibodies take 6 months to leave your system!

    Reply
  6. 6

    mpv61

    If dropping dairy seems too daunting, they could start with lactose-free. Hard cheeses like cheddar are generally dairy-free and Lactaid milk actually tastes fine (and can be used in recipes in a straight substitution). Just dropping lactose might help.

    Reply
    1. 6.1

      Anne

      It actually isn’t always the lactose (milk sugar) that people with celiac react to it is the protein casein which has a similar structure to the gluten protein. Sheep cheese protein is a little different and may be better tolerated.

      Reply
    2. 6.2

      Rosemary

      Lactose free products WILL NOT help someone that is allergic to the protein in dairy. Lactose intolerant people are allergic to the sugar in milk. I am allergic to the protein and dairy and drinking lactose free milk does ABSOLUTELY NOTHING to help me. I would recommend going strict PALEO (including no gluten, no dairy, no sugar, etc) with her for 90 days like my doctor did with me. Consider natural anti-inflammatories and gut healers like Tumeric supplements (must take with cayenne or black pepper to make it bio-available), Revesterol supplements and L-Glutimine. Avoid nightshades and other gut irritants. The diet is no fun, but you have to concentrate on what you CAN eat instead of what you CAN’T and the fact that she will in time be feeling A LOT BETTER. I get the GERD, Acid Reflux, nausea and coughing too. The coughing was getting so bad I would end up gagging and throwing up in my mouth almost every morning. Try Ricola cough drops for the coughing, probiotics, and ginger. Hot lemon water also helps with the cough. Whole Foods an sprouts has some chewable GIN GINS that help with throat, cough, GERD nausea symptoms. Hope some of this info helps. Take things one day and one meal at a time. It’s a whole change in lifestyle and it’s normal to get upset and frustrated. It’s not easy for the person diagnosed or the family. So much of our lives and social interaction are focused around food. Good luck! :)

      Reply
  7. 7

    Paula momof8

    I completely agree with dude’s suggestions.. I am 5 years in with this celiac stuff . Me and 6 out of 8 of our kids have to be gluten free. However like most of us gluten free is simply not enough with this crazy disease. I had to go dairy free, nearly 100% grain free, soy free, legume free, and light on nightshades aka Paleo diet before I even began to feel better. Unfortunately that only helped for a while.. Since then I have been off and on the GAPS diet because it is so hard to stick to.. trying different supplements . It is daily thing of the right foods, rights vitamins, good sleep. I feel so much better than I did 5 years ago but I am not 100% even now. It takes a lot of patience. The good news is what I have seen with my children. They have responded so much faster to healing than I have .I think the younger you are when find out you have celiac disease , the less damage there is and the faster the healing process takes place. The important thing is to keep doing what you need to do.

    Reply
  8. 8

    Monika

    What city/area are you in? Two weeks is really not a lot of time, celiac wise; my daughter took about 6 weeks to notice changes and party of it was that we were learning the gluten free as fast as we could but made several mistakes in our early days/weeks. For example, we ate out and were given ‘gluten free’ corn chips only to find out after several visits that they were fried with the chicken nuggets. :-( Back then, on our week two, I didn’t know rice crispiess had malt = barley = gluten. Some things that seem so OBVIOUS to me now, were not then, so we made several mistakes in our first month which I’m sure delayed recovery. I would find a good parent group of celiac kids and a good dietician who can guide you until you know about malt, and spelt, and semolina, and twirlers having gluten and… you get the idea.. :-) Maybe she has a bit of reflux happening? I’m not a doctor but don’t hesitate to call yours! I hope she feels better in another few weeks.

    Reply
  9. 9

    Marie

    Chances are, she is still getting glutened by cross contamination. If you’ve ever baked even a batch of cookies, your house is contaminated. The drawers that hold the measuring cups, your baking sheets, your convection oven, the heating ducts… depending on her sensitivity, all are sources of gluten contamination. It is SO frustrating!!! I had to hire someone to clean out my kitchen and pantry, scrub it down and either throw out or give away, all the contaminated food. Lentils are naturally gluten free, but if you pick thru a cup or two, you will find wheat kernels because they are grown on the same ground as wheat and are processed with the same equipment so…not gluten free. Just think of Gluten as Kryptonite. Even a crumb will wreck me for 3 days and I’ll feel awful for a week. So, not only do you have to be Gluten Free, but you have to be aware of food that has been in contact with gluten. The words “Processed in a gluten free facility” are your friend! Also, carrageenan, xanthan gum, and guar gum are to be avoided. They “cause gastric distress in some individuals”. I didn’t have problems with distress, it just felt like my guts were being shredded. SO, as you can see, you have a hard row to hoe, but at least, you know where the weeds are. Hang in. It gets better, but it takes absolute vigilance.

    Reply
  10. 10

    Susan

    I would definitely recommend giving up dairy products to see if that helps her with the “sick in the throat” feeling. I felt something similar after going gluten-free. It was like a film in my throat all the time. I was constantly clearing my throat, but it never helped. As soon as I gave up dairy, that feeling went away and has never returned.

    Reply
  11. 11

    Telyb

    I’m a mom of a celiac kid and had an endoscopy/biopsy done on myself. I would second all of Dude’s suggestion and add that the endoscopy Itself caused symptoms for me, unrelated to celiac (which I tested negative for) and probably having more to do with irritation or inflammation from the procedure itself, including symptoms of GERD up in the throat/chest area. Using an otc acid blocker for a couple weeks helped. Remember to ask the doc first and/or make sure any medications you get are gluten free.

    Reply
    1. 11.1

      Karl

      Go to a land without churches or any other ‘holy’ places and that has not fanatics of God(those are Goths or Gerans that adore the king or the lion ‘the crasy’ and cause acid reflu and tension reflu too)

      Reply
      1. 11.1.1

        wheatfreeeee

        Whuhh??

        Reply
    2. 11.2

      Rosemary

      I got addicted to Pepcid. I tried to cut it cold Turkey but got an awful backlash of acid reflex. You can’t do that. You have to wean yourself off this very strong drug. I personally would NOT recommend any sort of OTC or prescription that alleges to control GERD / reflux. My body got reliant on the drug and then it eventually stopped working on me and my symptoms continued to just get worse. It was like my body built up an intolerance to the drug and I was only getting sicker. I think you need to remove the root cause of her problem by eliminating all gut irritants, possible allergens (gluten, diary, nightshades, legumes, tomatoes, etc) by putting her on a strict paleo diet. This could take up to 90 days before she realizes significant results. Then slowly introduce only one food at a time, wait three days, if no reaction, introduce another food, wait three days, and repeat this process. If you get a reaction then you know that food causes a problem for her and AVOID it. When you have a reaction it could take 2-3 days for the body to normalize itself again. Make sure you wait three days after a reaction before introducing another new food. Also be careful of introducing too many foods at once. For example if you eat goat cheese and also eat corn in the same day or in the same three days you won’t know specifically what food will have caused a reaction and then you have to test both separately all over again after waiting the three days. The whole process takes an incredible amount of patience, but you have to stay focused on all the benefits you will experience once you have accurately identified specifically the problem foods.

      Reply
  12. 12

    Chery

    I know I am pretty much alone with my opinion that our wonderful government missed the mark with the 20ppm standard. And I have not search the Dude’s site to see if this is reported anywhere here. But this is one of my complaints about the FDA standards:

    Snyder’s pretzels tested at 58,000ppm. The company claimed the pretzels returned by a customer who noticed they were too long were in fact gluten free.
    Don’t trust me, read all about it for yourself here:

    https://www.glutenfreewatchdog.org/news/snyders-of-hanover-annies-and-all-gluten-free-manufacturers-what-is-your-protocol-for-addressing-consumer-complaints/

    Then we have General Mills testing over 24 hours of production ending up with an average PPM over 24 hours of production. A process that allowed product thru that was eventually RECALLED. How many others are putting out products that will eventually kill Celiac’s who consume them? Why do we trust these money hungry people with our health? Is that bowel of cereal, piece of bread, or slice of cake really worth dying for?

    So when I hear people talk about “going gluten free” and still being sick and then guess-T-mating that it must be oats or milk or sugar or whatever, I have to wonder if it is just the “gluten free” processed stuff they are eating.

    Just my two cents.

    Reply
  13. 13

    Jessi

    The FDA standard of 20ppm is a joke. So many celiac a (me included) react to products that are above 5ppm. So I can’t trust any product that has a gluten free label, because that label in and of itself means nothing. I only purchase products that have verified testing protocols and test below 5ppm. Cut out all processed food to allow time for the gut to heal. Once she starts feeling better start incorporating foods from companies that do it right and have been verified to be under 5ppm. Also, is her shampoo, conditioner, make up, etc. verified as gluten free?

    Reply
  14. 14

    Lori

    Give it time, healing takes time, I also find that I can do some replacements, but feel better if I don’t eat too many grains. I can do dairy, but for milk I use Fair Life – its Lactose free, tastes much better then Lactaid and has more protein per serving. Probiotics help with healing. But first and foremost makes sure you understand all the places gluten can hide. It took me 6 months of still feeling sick to realize things like salad dressings, soy sauce, and fully understand cross contamination. Getting educated is so important. The final culprit for me, was my lipsticks…. so hard, but had to toss all of them and find brands that were safe for me. Make sure she isn’t getting accidentally glutened from sources you wouldn’t expect, and again, give it some time and patience. We are all here to support you!

    Reply
  15. 15

    MaryAnn

    It took my husband a year to finally feel better. I agree that eliminating dairy and corn, reducing acidic foods, like tomatoes and staying away from most gluten free processed foods is important during the healing process. You have my sympathy on how hard this is to watch in your child. This is a great web site for information and support.

    Reply
  16. 16

    laura

    I had to get a special antibiotic to clean out my intestinal tract. This wiped out ALL good and bad bacteria so I started fresh.
    Then eat only fresh fruit, fresh veggies and fresh meat ( no frozen packaged stuff) all cooked in a NEW separate pan for a month. If using butter or other condiments, get NEW ones and label GF and ONLY use them. And make sure they are labeled Gluten Free!

    After that you can slowly introduce items one by one and see what reactions occur. This will help determine what other items need to be removed from the diet (ex. dairy)

    Reply
    1. 16.1

      Rosemary

      Antibiotics actually KILL all your good gut bacteria with the bad. Taking Antibiotics willy nilly or when you don’t really need it will trash your natural gut biome and can have devastating effects on your digestive system. The over prescription of Antibiotics also leads to Antibiotic resistance and the strength of superbugs. I can’t see how recommending taking an Antibiotic is good advice at all. You want to encourage your good gut bacteria to grow not destroy them. Eliminating processed foods is a good idea, however.

      Reply
      1. 16.1.1

        Christiane

        I think what Laura was probably referring to was an antibiotic for SIBO. It’s pretty common for celiacs to have SIBO when we are first diagnosed, and that often does require an antibiotic to get it under control. After taking Xifaxan, I then rebuilt with probiotics that keep the SIBO away (Saccharomyces Boulardii and Prescript Assist), and I have been SIBO free for two years now, staying on those probiotics. After getting rid of SIBO, I was also able to eat Fodmaps again, which had been causing major problems for me. For some with mild SIBO, those specific probiotics, especially the Boulardii, can help clear it up without antibiotics, not others. (Some probiotics, such as Lactobacillus acidophilus, actually feed SIBO and make it worse.) had severe SIBO, and was losing weight because of it. So in that case, yes, an antibiotic is a necessary first step to healing.

        Reply
  17. 17

    Anne

    I felt better after giving up dairy (cow and goat), soy, white sugar, and all grains including rice, corn, etc. taking a high quality probiotic along with cod liver oil and borage oil improved the inflammation. I was treated for SIBO (small intestinal bacterial overgrowth) as well.

    Reply
    1. 17.1

      wheatfreeeee

      Did you have antibiotics to treat the SIBO?

      Reply
  18. 18

    Giulia

    I was diagnosed few months ago and still doesn’t feel 100% better. I think it can be doctors’ faults to give false hope to people: after only two weeks of gf diet my nutritionist started to ask me if I was feeling well, and when I said I didn’t feel any different, she wanted to prescribe me a very expensive blood test for other allergies. I didn’t do that. I do not exclude I might have other allergies, but I just trusted my body and I am giving it some time to heal from gluten. Now I still do not feel 100% well but it has been a slow improvement (with some accidental glutening that was not too funny).

    On a separate note… is there any “scientific” method for other allergies (such as dairy or corn), or not? Should I consider the expensive blood test? I am a little suspicious because my doctor did not suggest it, only the nutritionist who is not a doctor… if anybody has suggestions, thank you!

    Reply
    1. 18.1

      Rosemary

      I had the Cyrex Blood test that helped identify other allergens. It turned out that I was also allergic to Dairy and Teff. The test is expensive and my insurance covered none of my test or my treatment. But to me it was worth it because I didn’t have to keep chasing my tail. After the test I knew to avoid these things and it gave me confidence about what I should not be eating. Even with the blood test, my doctor still placed me on a 90 day paleo diet with supplements to heal my gut and reduce my inflammation and after the paleo diet I could carefully start introducing new foods one at a time methodically. I had a spreadsheet’s long list of symptoms and western medications I was on to try to attack all these symptoms. I am a firm believer that Western Medicine for conditions such as these are ineffective at treating the problem because they aim to mask the symptoms instead of removing the root cause of the problem. My doctor also ordered a full blood panel to test for other indicators that I was experiencing inflammation. For example, I was anemic, my Thyroid was having issues and my antibodies were high, all markers of a highly inflamed system as a result of leaky gut / an auto immune reaction due to gluten sensitivity.

      Reply
  19. 19

    Karla

    I know it’s hard especially with a child, but two weeks isn’t that long. Has she also gone dairy free? That’s a common suggestion for at least a year after diagnosis. I’ve been having awful trouble with dairy lately. Some even have to give up other grains too. Be careful with things like cooking pans and toasters. I got new ones that I only use for GF foods. I had to switch toasters especially because I kept feeling sick. Try to find some other celiac kids too as a support group for her. It gets easier but give it some time (probably not what you want to hear!).

    Reply
  20. 20

    Christiane

    This community is so helpful because when I was first diagnosed and went gluten-free but still felt horrible, my doctors said I should be feeling better and the fact that I wasn’t meant I probably had another autoimmune disease (I was told lupus, crohn’s, etc.) But hearing from all of you makes me realize this is just the way it is for most of us with celiac! I do also have Hashimoto’s, but that was diagnosed before my celiac, and for three years I was on thyroid medication that had corn and lactose in it, which contributed to the problems. It then took about two years to find the right doctor to diagnose me with SIBO. It seemed like I had problems with almost every kind of food at that point. After I was treated for SIBO (with Xifaxan, which also had an unidentified starch component in it that made me very ill while I took it), I also tailored my diet to eliminate symptoms, following a food plan that is a mix of the autoimmune paleo diet, the Perfect Health Diet, and the low FODMAP diet. In addition to gluten, I don’t eat dairy, soy, eggs, corn, and all grains except white rice. I figured out which foods were bothering me through the elimination diet because when I went to an allergist about the other food problems I had, she said she couldn’t help me because there was no way to test intolerances. She could only test for anaphylactic allergies. One of the last and most difficult parts was eliminating trace corn, which is in everything, including vitamins and supplements, jam, Earth Balance, most things with citric acid, and much store-bought gluten free bread. I seem to need more carbs than the autoimmune paleo diet provides to keep my thyroid hormones up, which is why I eat white rice. I also take two kinds of probiotics to keep the SIBO away: one is Prescript Assist (soil-based probiotic), and the other is Saccharomyces Boulardii. Some forms of probiotics can promote SIBO. I did terribly on Culturelle, for example. I still eat low FODMAP, but I’m almost a year past SIBO now, and I’m now able to handle small amounts of FODMAPs in moderation. During the time I had SIBO, I also developed a problem with histamines, so I ate low histamine too for approximately six months, and now I can handle about one histamine item per day without symptoms. It’s all SO complicated, and it took me about five years to do the research and figure it all out, but I’m here to say it can be done!

    Reply
    1. 20.1

      wheatfreeeee

      Do you make your own jam?

      Reply
      1. 20.1.1

        Christiane

        Corn is in jam in the form of pectin and citric acid. I eat St. Dalfour jam (a 100% fruit jam).

        Reply
        1. 20.1.1.1

          wheatfreeeee

          For those who like to cook, it’s fun to make jam with naturally occurring pectin or pectin from apples. I just make fruit butter.

          Reply
  21. 21

    wheatfreeeee

    To the Mom, it’s only been two weeks, and obviously you want your daughter to feel better, but it can take a while to track down all the sources of cross contamination, then you can start looking for other food sensitivities…it’s a process.

    It’s a big change for a six year old and I imagine she needs support to know that’s it’s ultimately a healthy good change and not a stressful scary one! She’s certainly not alone in it!

    Reply
  22. 22

    Heather

    She may be saying that she feels sick in her through from feeling the urge to vomit if she is struggling with GI distress, or she may be struggling with another issue called eosinophilic esophagitis. May be worth looking into just to rule it in or out. I agree with others thoughts of removing dairy from her diet. Lactose in dairy is digested by the tips of the intestinal villi, the villi that atrophy/get worn down from gluten exposure in Celiac disease. Until her villi are healthy, she will be unable to properly digest lactose. Hard cheeses that have been aged for over a year are naturally lactose free, as the lactose disintegrates and breaks down during the aging process. However, casein can be irritating too. Dairy is considered to be inflammatory, so I have found that my symptoms are much better when I avoid it (I have have Celiac). The dairy also irritates my skin. For me, I have done much better eating primarily a whole foods diet, with the very few items I buy in a package containing minimal ingredients that are certified gluten free. I have been gluten countless times in the past by products claiming to be gluten free, as in to the 20ppm standard, but not certified to the 5-10 ppm levels. I know everyone feels differently about this, but with the percentage of individuals not healing on the gluten free diet it is worth a try. Eating whole foods can be daunting for some that may be making a major life change, especially for those not used to cooking all too often, but for me I have found I feel so much better, so it has been worth it! I wish you and your daughter well and I hope she finds some relief soon :) I hope this helps

    Reply
    1. 22.1

      Heather

      Sorry about this duplicate posting…my first time posting…still trying to figure it out!

      Reply
  23. 23

    Rosemary

    When I got diagnosed, my doctor put me on a strict Paleo diet for 90 days. I took liquid tumeric supplements, Revesterol supplements, Powdered L-Glutimine. I feel tons better and miraculously the spectrum of all my numerous symptoms went away. However, I accentually and inadvertently get seem to get glutenated no matter how hard I try. Eating out and traveling is especially difficult. Cross-contamination I think is a culprit most of the time that I have problems. I bring a little container of Tamari as a soy sauce alternative, a small container of olive oil (to substitute for butter) and a small container of olive oil / balsamic vinegar for salad dressing. I try to call ahead to get a feel for how accommodating and informed a restaurant is ahead of time before going to a new restaurant and also check their menu on Yelp or their website to see how many likely Gluten Free options may be available that aren’t completely un-filling or absolutely tasteless. Just because I am gluten free does not mean I am vegetarian, don’t like things that taste good or am vegan. You’d be surprised how uninformed many in the food industry seem to be. The worst are business meals at convention centers. I once waited a whole hour to be fed my meal after all my colleagues had left the table (we had an hour and a half total to eat). Once they finally “accommodated me” they brought me a vegetarian pasta dish. I asked how on earth can pasta be gluten free? I also suffer from hypoglycemia and was about ready to pass out from low blood sugar. All I asked for was a the same plate with no sauces on it and it took an hour. I was so miserable and weak I was practically in tears. Currently I try to drink at least one Kombucha per day (you don’t want to overdose on this stuff). Ginger helps me with the nausea. If I have a lot of Intestinal symptoms (gas, bloating, stomach pain, diaherea, etc) and need to be functional like for work or travel where I don’t have immediate access to a restroom or can’t be going to the restroom frequently, I take Immodium to help with the symptoms. It shouldn’t be a license to “cheat” but it can help get you through a bad day if you accidentally ingest gluten. I’ve also been making this Apple Cider Vinegar, Cayenne Pepper, Tumeric and Ginger Tonic (it’ll clean you out, so be careful not to overdose). It also has lemon juice and zest of orange in it. Even though I strive to be strictly gluten free, it seems like I’m always on a roller coaster with my diet. Somehow all with all my efforts, I manage to somehow still get glutenated inadvertently. It can get very frustrating dealing with eating out, finding a good place to eat, traveling can get extra stressful (I try to stay in condos where I can make a lot of my own foods), socially eating with others who think you are “high maintenance” etc. All I can say is that life is not easy for us, but there is hope of alleviating most of your symptoms if you can try your best to control most of your meals. One has to stay constantly vigilant and managing this disease can get frustrating at times.

    Reply

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