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Newbie With Lots Of Questions


Cath4k

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Cath4k Apprentice

Hi everyone,

I have a couple questions:

1. What is detox like for going gluten-free? How long does it last?

2. What do you think about EnteroLab? If we use them, which tests do you recommend? We are a family of six and probably would not test everyone initially, but I would want to test at least two right away if we went this route. I need to keep it as affordable as possible, so I only want to do what is necessary. I have not ruled out going to the regular doctor for testing, but I also realize that the standard tests don't always show a problem when there is one.

3. Is there a list somewhere that can help with shopping choices?

4. Is it possible to have only a couple family members go gluten-free or do we need to change the whole household?

5. Should we also initially test dairy products, too? I have read the argument that because dairy cows eat gluten food, it gets in their milk so gluten-intolerant people may not be able to eat dairy.

I am sparing you all our long story and just trying to start with some basic questions. :) I will say that our whole household started the Feingold Diet a week ago. They recommend we stick with the diet 6 weeks before eliminating anything else, but my oldest dc insists on starting gluten-free also at this point. She doesn't want to wait because she feels so horrible. We had followed a modified FG diet for a year and a half, but didn't realize how much stuff was hidden in food and had never thought to change our non-food products.

My oldest dc is almost 16 and when we looked at a list of the 15 most common symptoms for gluten intolerance, she suffers from 11 of them. We did take her to her pediatrician about her symptoms almost a year ago and then another doctor by referral six months ago and are due to go again (they have mostly taken a "wait and see" approach so far.) Standard tests were run (CBC, Metabolic panel, sed rate, and thyroid.) Gluten and food allergies were never brought up or discussed by either the doctors or by us. I did not realize how much they all line up with gluten-intolerance until a few days ago.

I am tempted to go whole foods only (veggies, fruits, beans, nuts, meat, and rice) - except I have one dc (only 2 yo) with severe eating issues due to sensory issues and reflux and that dc would be severly lacking in food choices. He already only eats a handful of items. (We are seeking help with this through occupational therapy and food therapy.) Maybe I should go whole foods for the whole family and just make his items from scratch where I can (I am referring to things like bread, jelly, etc.)??

Thank you,

Cathy


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nora-n Rookie

Hi

Regular blood tests require eating lots of gluten for at least 6 weeks to 3 months beforehand they say...

My daughter got a diagnosis of celiac with negative blood tests and biopsies, but had to fight for it. But she had been gluten-free for some months beforehand and experienced dramatic improvements.

nora

taylor- Rookie
Hi everyone,

4. Is it possible to have only a couple family members go gluten-free or do we need to change the whole household?

5. Should we also initially test dairy products, too? I have read the argument that because dairy cows eat gluten food, it gets in their milk so gluten-intolerant people may not be able to eat dairy.

Hey there! I don't know anything about the testing and detox stuff, because when i got diagnosed I was A) to young to remember it and B) I believe they only had the biopsy when I was diagnosed.

I do know that detox is different for everyone, and i think, according to my parents and pictures, that it took about a year for me to be completely healthy again.

I am the only person in my house that is gluten-free. Whoever was cooking had to make two dishes, a large one for the rest of the family and a smaller one for me, but it was usually quite easy to manage. I never noticed this before, but i recently left for college and was talking to my little sister on the phone. She informed me (jokingly) that she was glad i was gone because now mom makes homemade cookies and stuff. I guess i never noticed that mom rarely did much baking that involved flour. If she had to make cookies or something with actual flour she would usually just buy the cookies you slice and bake or do the cooking when i was gone. Like I said, I never noticed it before my sister pointed it out, so i guess that would be a change.

I also know that a lot of people are sensetive to dairy too. I am OK with it, but occationally will get sick. If I had to go through it now, I would probably just take gluten out at first, thats hard enough by itself and if I still have a lot of problems, then i would try the dairy too.

Hope that helps a little..

gfpaperdoll Rookie

You need to take the 2 year old gluten free - his food issues will clear - he will eat...

Sounds like he is one of the ones that get addicted to gluten. there are a lot of us that have somewhat of a small swallowing problem at times...

I would take the whole house gluten free & let the ones that can or want to eat gluten do so outside the house. Give it a good 6 month trial for all family members - I think you will be shocked at how everyone's health improves.

Most people find that it is just too much trouble to keep a "mixed" kitchen. Or so it seemed in the conversations at my support group. A couple of my friends that had gluten eating husbands finally gave up & said they were having a gluten-free house & hubby could do as he pleased at outside meals - & both of their health improved...

mftnchn Explorer

Welcome. This is a place with lots of information, including answers to your questions. It takes awhile to read everything.

Because of cross contamination, it is not easy at all to have both a gluten and gluten-free kitchen. Does your family do well with following a clear regimen in the kitchen? If not, you'll constantly deal with CC symptoms, and no matter what you have to constantly track where the gluten has been and what it touches.

There are two issues with milk. First, the tips of the villi in the small intestine produce the enzyme to digest lactose. When the villi are destroyed you can't easily digest milk. This is a temporary problem usually. Second, the casein protein in milk is structurally somewhat like gluten, and 50% of celiacs or so don't tolerate it.

There are some great lists on this forum for shopping.

Detox is not specific in length. Aside from this, there is the healing issue. It takes adults 1-2 years for the intestine to heal and function normally, children are faster. So this causes people to not handle many other foods for awhile. Symptoms can improve rapidly or slowly or both.

Detox can happen because of other compounding factors to the celiac or because there is another reason for gluten intolerance.

Enterolab does not diagnose celiac, but can reportedly pick up gluten sensitivity well. Many people here have had good experiences, but you should know that it is not well accepted yet in the mainstream medicine because Dr. Fine has not published his findings.

No matter whether you have blood tests (be sure to look on this site for the list of the 5 tests needed for a full celiac panel) or Enterolab stool tests, the dietary response is the key factor to confirm the diagnosis. Gold standard for celiac diagnosis is positive biopsy.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
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    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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