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  1. 1

    wheatfreeeee

    Hashimoto’s can throw a wrench in things because it can lower stomach acid production and intestinal motility. So food just sits like a brick.

    I’ve found with Hashi’s that I have next to no tolerance for packaged foods or overeating. Also nothing spicy. Soups are good. Just plain vegetables and meat are good. Leafy greens are my friend.

    I know there are a lot of supplements out there aimed at stomach acid, but I know about the validity.

    Reply
    1. 1.1

      krista

      I have used a naturopathic doctor in the past with success. They tend to look at the holistic view instead of just western medicine. I have three auto immune diseases including thyroid. I do alot of natural stuff such as acupuncture and massage to help!

      Reply
      1. 1.1.1

        Skep Tic

        Alas, 3,000 studies suggest that acupuncture’s reported positive effects may not even be the result of placebo, but rather “a regression to the mean – the phenomenon whereby patients get better on their own, but attribute their recovery to whatever treatment they have had.”

        http://www.theguardian.com/science/2013/jul/26/acupuncture-sceptics-proof-effective-nhs

        Reply
  2. 2

    Tiera

    To the dad with the 5 year old with Celiac…I feel your pain! My now 9 almost 10 year old was diagnosed at 5. We were lucky in that he was diagnosed rather quickly without being constantly ill or in the hospital. And by rather quickly, I mean it only took a year after he started with pain in his stomach that had him dropping to his knees on the walk to school, which the doc wanted to blame on constipation.

    Anyway, he goes to a charter school and from the start there we lucked out with 2 teachers that fully understand if not Celiac, at least food allergies and how debilitating they can be. One teacher (who was his 1st & 2nd grade teacher) has a relative with Celiac. The other teacher, his current teacher, spent the first 2 years of college sick and thinking she was dying until she figured out her food allergies. They are beyond helpful and understanding. I kind of fear his next teacher though as I know nothing at all about him.

    We did pull him out for a short time this year and homeschooled him. His anxiety levels were through the roof and adding to his stomach issues. He’s been getting sick, last year he missed 45 days of school. Having the extra time out of school seems to have helped and I hope going forward that we nipped that in the bud.
    All that to say, you’re not alone…and definitely get a link to your blog here..it helps to read other’s experiences.

    Reply
  3. 3

    KateJ

    Definitely get the Coeliac UK frustration!

    Basically, they permit anything under 20ppm to be listed, even if it has a gluten containing ingredient in the final product. My personal pet hate is barley malt extract which (a) makes me ill at low concentrations and (b) is in everything: breakfast cereal, concentrated stock, chocolate, vinegar… Others struggle with gluten free oats, or codex wheat starch. I’ve even seen normal wheat flour declared as an ingredient, but the quantity was apparently small enough that the end product was classed as gluten free!
    Thanks to the 20ppm rule, a gluten free label on the front doesn’t mean there is no necessity to read the ingredients.
    Now try explaining that one to someone who has kindly offered to cook for you, doesn’t have the disease themselves, and has headed to the shops to source suitable ingredients.

    Reply
  4. 4

    Theresa Henriksen

    To the person whos doctor never called back. Go there get your biopsy results and find another gastroenterologist ! Hopefully someone who specializes in Celiac. Any doctor who can’t
    call or see you to explain your test results is irrresponsible. Please get another opinion

    Reply
  5. 5

    MC

    To the last letter writer whose ALP is low and “digestive system is not working”:
    1 – If feasible – GET A NEW DOCTOR
    2 – Ask about prescription pancreatic enzymes (pancrelipase — brand names Creon and Zenpep). When I was first diagnosed my doc immediately prescribed Creon for 6 months. She said that when the small intestine is damaged, it doesn’t always communicate properly with the pancreas resulting in an insufficiency that makes it harder to digest protein, fat and carbs (basically everything). (Due to insurance considerations I had her change the prescription to Zenpep before I filled it – definitely check prices)
    3 – Consider asking for followup Celiac blood tests – with how long you have been gluten free the numbers should be normal or close to it. If they are elevated than you are probably getting significant cross contamination somewhere.
    4 – If you never had a repeat endoscopy, consider asking for one to evaluate how you are healing. My doc, a little old school wanted to do a repeat endoscopy at 6 – 12 months, but I put her off as my research shows that 2 – 3 years is now the recommended time frame. She says I keep her on her toes.
    5 – Finally, I agree with the Dude that you should try some form of a whole foods diet. Both Whole 30 and AIP are good options. But personally, I keep trying to work up the will power to do Dr. Fasano’s Gluten Contamination Elimination Diet. A few years ago Dr. Fasano did an admittedly small study of people who were not responding to a gluten free diet. He put them on a strictly whole foods diet with no grains except rice. The diet allows some foods that the above diets forbid, but it includes even single ingredient frozen fruits/veggies as processed. 82% of the people in the study that stuck with it for 4 – 6 months finally showed intestinal healing and were able to avoid the steroid treatments that are used with refractory celiac disease. Below is a link to the report. If you don’t want to read the whole thing, at least scroll down to Table-1 and the paragraph before it for a description of the diet so you can compare it to others.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/?report=classic

    Reply
  6. 6

    Christine Walters

    My husband and two of my three children are endoscopy confirmed celiac. I have NCGS and our home is gf and we eat out rarely. My husband and I are grain free with the kids occasionally consuming rice in gf products or corn. Recently read Dr Peter Green’s book “Gluten Exposed”. I would not say I am a fan of the book, but one part of it really struck home. “Mercury is a naturally occurring heavy metal that appears to be increasing /accumulating in the food chain… Mercury can damage the nervous system, kidney, and lungs and remains in the body for a long time, where it affects inflammation and the immune system. A recent study showed a fourfold increase in mercury blood levels of celiac patients following a gluten-free diet… Another study found elevated blood levels of mercury, lead, and cadmium and urinary levels of tin and arsenic in people eating a gluten-free diet, some with and some without celiac disease…. Rice, a common substitute in a gluten-free diet, may contain high levels of arsenic as well as cadmium and mercury. Other heavy metals (e. g., tin, lead, and mercury) have also been found both in gluten-free food and fours and the people ingesting them… A greater number of patients with celiac disease develop neurological symptoms over the ensuing years after starting a gluten-free diet. While this has been attributed to the development of a new autoimmune disease, the recent concern about the occurrence of metals such as lead, mercury, and arsenic in people on a gluten-free diet may I fact be manifestation of heavy metal toxicity. ” Wait, it gets even better, let’s say you already avoid all rice, he mentions corn next. ” Corn Fungi… The other staple of a gluten-free diet is corn. A recent study comparing the gluten-free diet of people with celiac disease versus those on a regular diet found a mycotoxin (a chemical produced by fungi/mold that is harmful to humans and domestic animals) in a number of corn products. The levels of this particular mycotoxin – a fumonism associated with nervous-system and cancer-causing damage in animals – – where high, raising concern regarding the long-term safety of various corn-based products. ” This book is written by the director of the Celiac Disease Center at Columbia University and published May 2016. Our family feels best eating organic fruits and vegetables, grass fed meats, pasture raised eggs, and basically a whole 30 diet with red wine for the adults.

    Reply
  7. 7

    Cali Celiac

    Greetings from gluten freelandia,

    DX last summer and GF for almost 6 months now. I thought my father passed away from cancer of the esophagus that spread to his stomach and beyond. Found out 2 weeks ago he actually had a rare type of cancer of the small intestines that spread. My father had been struggling with stomach issues and been told to modify his diet different ways, but continued to get worse until the cancer DX. They removed lots of his insides and he died a few moths later. It seems obvious to me he had CD which led to the cancer and it helps me to understand why. Unfortunately I don’t think that’s good news for me. Does anyone know how cancer of the small intestine is DX? Are there blood tests for markers?

    I also, …shit, had another question and forgot it while I was typing. Argh! Oh yeah, I remember now. I used to have high cholesterol (around 250) a bad ratio and extremely high triglycerides (over 400). My last blood work shows my cholesterol and triglycerides are all in the normal range now, but my blood sugar levels are now pre-diabetic and they used to always be fine. Anybody else experience this after going GF?

    Frankly, CD has taken the joy out of eating and made it a big pain in the ass. Tried a new lower sugar yogurt (Dannon)-had gut pain, massive gas and diarrhea all day. Looks like some occult blood again too (is occult blood a typical symptom of CD?).

    Lastly, is there any short term treatment for the neurological symptoms (depression, anxiety)? Divorced last year after 31 years of marriage, I’m alone and although I have some nice friends I have nobody to turn to when struggling who really understands, so you here are my support group.

    Reply
    1. 7.1

      C W from MI

      Dear Cali Celiac,
      Sorry to hear about your dad. I don’t have answers to some of your important medical questions, but I want you to know you are not alone and I pray things get easier for you.
      When my husband and 2 of my 3 children were first diagnosed back in 2014, it was a sad, stressful, overwhelming time. Now, we are striving and loving life and for us it got a lot easier. When first diagnosed, I went out and bought GF everything–bread, doughnuts, sugar cones for ice cream. Spent tons of money on terrible tasting cookies, etc. I felt happy everytime I found a new, edible replacement product–basically, my kids won’t go without. Then I started reading–alot. My husband was undiagnosed for over 20 years. At time of diagnosis, he was obese, irritable, and very depressed (esp in winter), suffering from severe stomach pain and gi problems that would often prevent him from sleeping. His family members already had diabetes. With all that reading, I learned that many people following a typical GF diet after a year are at increased risk of metabolic syndrome (includes diabetes, high blood pressure, and obesity). Many GF replacement foods “contain excessive amounts of sugar, carbohydrates, sodium, and calories.” I decided to try a drastically different approach to eating GF using more of a whole food, grain free, lower carb, higher healthy fats from sources like avocados,and coconut oil. We use coconut flour on occasion with some nut flours sparingly. My husband lost over 70 lbs. His stomach problems are much less severe and rarely bother him. He is actually working out as I type this. He still has another 30 pounds to go, but we are both confident he will get there. He is a changed man. He has a new zest for life and energy. He has been promoted at work after years of being passed over.
      Our whole family recently watched “That Sugar Film” free on Amazon prime right now. We are all further improving our diets after watching the movie. My teen boys are actually drinking mostly water, or tea (unsweetened– hot or iced)–no juices or sweetened drinks . What is interesting is the movie has nothing to do with celiac and doesn’t mention gluten, but if you look at his recipes online they are GF, many grain free, just real healthy food without added refined sugar. We sometimes have awesome products grain free but made with tapioca starch (which will definitely spike blood sugar) but make delicious pao de queijo (Brazilian cheese bread) or yummy Against the Grain bagels. But we use these treats sparingly.
      As for the medical issues, especially with your family history, personally I believe in getting a second, even a third medical opinion, perhaps from a well regarded medical center, or better yet from one that specializes in celiac disease.

      Reply
      1. 7.1.1

        Cali Celiac

        C W from MI

        Thanks for the kind reply. It sounds like your family is coping well with CD and the lifestyle changes that come with it. I have done a lot of online research and continue to do so, enough to find a lot of conflicting information. I’ve only been GF for almost 6 months and realize my intestines haven’t had time to heal yet, but I’m concerned, but I’m concerned about the other issues. I’m 5’9″ and my weight has dropped from a normal range for me of 180-185 to 157 in the last year. Doesn’t make sense to me that I’d be losing weight while having a higher blood sugar level. The main GF replacement foods I eat are bread substitutes and the Udi’s bread is only 1 gram per slice and occasional pasta substitutes which are not too high in sugar either. I suppose the complex carbs in these items could produce higher sugar levels than the wheat based products, I’m not sure. I have never drank sugary drinks like soda or sweetened tea, only cream in my coffee and limit sweets to 2 cookies or 2 chocolates per day. I work 12 hour days and am having a hard time finding whole food meals that I can prepare and eat in a 30 minute meal break.

        Honestly, I’m concerned that I might be in early stages of small intestine cancer and fear it will be diagnosed too late like my father’s was. Unfortunately, I’m struggling with a lot of brain fog, depression and anxiety which makes me question my own reasoning.

        Interesting thing I noticed, just like you noticed the diet similarities, I’ve noticed that the symptoms of Myotonic Dystrophy, which runs in my father’s family (I’ve lost 2 uncles, an aunt and 2 cousins to the disease) symptoms match some of the symptoms for CD, like Ataxia, Peripheral Neuropathy and fatigue. Sorry for rambling on and thank you for the suggestions. Pao de queijo sounds yum.

        Cheers

        Reply
        1. 7.1.1.1

          wheatfreeeee

          Blood sugar is affected by all carbohydrates, not just the grams of sugar on nutrition facts. Udis products are actually simple carbs, generally speaking, so is pasta. A typical slice of gf bread will probably be in the 15-18g range. Carbs in fruit, vegetables, etc, will also affect blood sugar.

          Prediabetes usually does well with limiting carbs to keep blood sugar from getting too high, so it doesn’t progress to diabetes. Ideally a doctor should help you with this, but it’s hard to get care for prediabetes, and most doctors are still pretty generous about carbs.

          Reply

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