Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Newbie Healing Diet Questions


Kendall2

Recommended Posts

Kendall2 Newbie

Hello,

 

My son was recently diagnosed with gluten intolerance.  He is a young adult and had been having symptoms for about the past year - acid reflux, stomach discomfort diarrhea and occasional nausea. 

 

He has been off gluten for almost two weeks and is feeling much worse than he has since his illness began.  Some days he is okay but most of the time he feels weak and extremely tired.  After reading a lot of posts on this forum, we understand that feeling worse after starting a gluten free diet is normal.  I really appreciate the information here as it has helped to answer a lot of newbie questions.  However, I still have a few more.

 

In order to choose a good diet book so I can prepare the right foods for my son. I've read about the various diets designed to help heal the small intestine GAPS, SCD, BED, Paleo.  I'm suffering from information overload.  Different people seem to do better on different diets.  I was leaning toward the BED diet because it targets yeast overgrowth which might be the cause of Celiac disease.  Then I read that the grains are too hard for many people to digest.  Some people reported healing much better on the GAPS diet.  Others said that it depends on blood type.  We don't know my son's blood type.  His doctor is willing to order a blood test but says that the insurance may not cover it.  Is it important to choose a diet according to blood type?

 

My plan is to order the Gut and Psychology Syndrome book (GAPS) along with the Internal Bliss recipe book to begin with.  Our income is limited so I can't buy every book but I'm open to suggestions.  My son has been eating homemade chicken soup, sauerkraut, and cooked vegetables but says that he feels best when he eats nothing at all.  He doesn't have any trouble tolerating dairy, eggs or corn but doesn't want to eat them for fear of developing more allergies. 

 

I bought some delicious strawberry kefir from Trader Joe's.  Is this a safe food or would it be considered dairy?  Would water kefir be better to start with than milk kefir? I've seen a lot of kefir grains for sale on Amazon.  Any recommendations on which brand to try?  Is it safe to eat plain yogurt with active cultures while healing?  Are bananas, apples or oranges safe to eat or too high in sugar?

 

We have aloe vera juice.  Is this a good thing to take to promote gut healing?  Sorry for the multiple questions and thanks in advance for any advice.

 

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

Welcome to the board.

I think the diet depends on the person. Some of these diets work better for certain individuals because of their various needs. I personally was not handling lactose well so I gave up lactose containing products. I was having issues with acne so I tried giving up milk completely...and it did improve a bit. I can eat some grains but others can not. Some avoid night shades or corn because it negatively impacts their health.

The problem is that he is so very new to gluten-free eating that his intestines are no where near healed yet and may cause symptoms to hang on for many months. It can be really hardto figure out if another food is causing a problem when the first problem (celiac) isn't fixed yet. You might consider waiting a few months before eliminating other foods besides dairy, which most celiacs have a problem with.

Eating whole foods that can be recognized goes a long way to help. Things like fruits, vegetables and meats are good. gluten-free breads, power bars, or treats aren't great....although I really wish that there was an M&M tree.;)

Best wishes. Oh, and gluten intolerances are often genetic so you might want to get checked out too. If he has any siblings, they could be affected too.

Kendall2 Newbie

Welcome to the board.

I think the diet depends on the person. Some of these diets work better for certain individuals because of their various needs. I personally was not handling lactose well so I gave up lactose containing products. I was having issues with acne so I tried giving up milk completely...and it did improve a bit. I can eat some grains but others can not. Some avoid night shades or corn because it negatively impacts their health.

The problem is that he is so very new to gluten-free eating that his intestines are no where near healed yet and may cause symptoms to hang on for many months. It can be really hardto figure out if another food is causing a problem when the first problem (celiac) isn't fixed yet. You might consider waiting a few months before eliminating other foods besides dairy, which most celiacs have a problem with.

Eating whole foods that can be recognized goes a long way to help. Things like fruits, vegetables and meats are good. gluten-free breads, power bars, or treats aren't great....although I really wish that there was an M&M tree. ;)

Best wishes. Oh, and gluten intolerances are often genetic so you might want to get checked out too. If he has any siblings, they could be affected too.

Thank you for your reply, Nvsmom.  I appreciate your support.  We do have four younger children who are symptom-free.  My husband and I have considered having everyone tested but I'm afraid it would be too expensive if not covered by insurance.  I've read that a blood test is only accurate if the intestine has been significantly damaged.  It seems there is  conflicting information about whether a saliva or stool test is the way to go.  I've also read about genetic testing but it seems that would tell us only whether we have the gene that makes gluten intolerance a possibility.  Any suggestions on what type of testing should be done on family members who don't show any symptoms?

kareng Grand Master

I would suggest you get info from reliable sources so you don't waste money.  Insurance should pay to test all first degree relatives of a person with Celiac.

 

 

Open Original Shared Link

 

 

 

 

Open Original Shared Link

1desperateladysaved Proficient

Welcome Kendell!  Nice to meet you.

 

I am about a year into the gluten free experience after suffering at least 30 years with celiac symptoms.  As I see it now there are a couple of ways to approach the diet.  You can either cut out any and all foods that are suspicious or common offenders, or you can go several months only eliminating gluten.  I went for the cut out many angle in hopes that it would be easier then cutting more later.  I also needed to heal as quickly as possible.  All of my physicians conclude that my intolerances to food will improve over the healing process.  Some of the damage is reversible.  However, gluten is never an option.

 

I work with several natural minded doctors.  I asked the Functional Medicine doctor that I work with, about aloe vera for small intestine healing and he thought it might be too astringent.  Nevertheless, I have used small amounts of it.  He did suggest glutamine for intestinal repair, however, if yeast is a problem, they may enjoy the glutamine.  I am taking IgG to help my intestine to heal this was recommended to me by another physician that analyzed my case.  My Functional Medicine team thought it seemed reasonable.  I highly recommend quality supplements to enhance healing and for enhanced nutrient levels.  I like to do a nutrient level test to help determine what supplements are required for your particular case.  I work with a natural minded physician for this.  I couldn't analyze my needs by myself.  One could, but requires more time then this homeschooling mother of 7 could muster.

 

My genetic test, along with my symptoms, were used to diagnose my celiac.  You may be able to tell something about you and your husband's genetics if you have your son tested.  You may need help to analyze this.  I had a good experience with my genetic test and the lab which I used was more then helpful.

 

As I understand the reason to avoid dairy with celiac, the villi in the intestine break a substance which helps to break down milk.  When the villi are too damaged, they cannot produce the substance.  The villi are designed in a way that they can heal!  Once healing takes place, one should be able to consume dairy products again.  I should also say that many on this forum do not have a problem with milk.  Others can tell they do, because they bloat when they consume it.

 

In my opinion, any reaction to a gluten free diet is a good one.  One might feel tired or more energetic, but a change is good and encouraging.  It might be making a difference!   I hope your son does get to feeling better soon, though.  I am very happy that he has his mother to help him in this.

 

If you want to receive the personal message I sent you need to check the upper right hand corner of the screen for an envelope with a 1 or 2 near it.  If you click on it and then scroll down, you should be able to see my message.  I say 2 because I am planning to send one more.

 

Diana

EmiPark210 Contributor

As someone who has been newly diagnosed as well, my perspective is that you don't have to buy a lot to try to heal. Talk to your son and have him decide what type of track he wants to take with this. It'll help some of the psychological shock of the change. Research things together and as a family so everyone understands and feels included. Pretty much what is needed for healing is whole foods. 

 

Open Original Shared Link

 

Read that. Shauna is an amazing writer and pretty much outlines everything you need to take a look at to eliminate all gluten and cook very well. Good luck!

nvsmom Community Regular

Thank you for your reply, Nvsmom.  I appreciate your support.  We do have four younger children who are symptom-free.  My husband and I have considered having everyone tested but I'm afraid it would be too expensive if not covered by insurance.  I've read that a blood test is only accurate if the intestine has been significantly damaged.  It seems there is  conflicting information about whether a saliva or stool test is the way to go.  I've also read about genetic testing but it seems that would tell us only whether we have the gene that makes gluten intolerance a possibility.  Any suggestions on what type of testing should be done on family members who don't show any symptoms?

Blood tests are recognized as the most accurate around here. I believe that the medical community does not put much stock in stool or saliva tests.

So your son has a diagnosis of gluten intolerance? It is not often a doctor will give that (in writing) so people can get accommodations made for them in places like college. From what I have heard, an "official" diagnosis is helpful for that.

Did your son get tested for celiac disease? If not, and you feel it could be relevant to know this (it can lead toother autoimmune diseases and problems like deficiencies) the tests you could request are:

TTG IgA and tTTg IgG

DGP IgA and DGP IgG (newer tests that are better at picking up early damage)

Total serum IgA (control test - 5% of celiacs are low in IgA)

EMA IgA (this test is one that sometimes does not show up in new celiac cases)

AGA IgA and AGA IgG (older tests)

If he is not a celiac and has non-celiac gluten intolerance(NCGI) the the blood work will be negative because there is no villi damage. NCGI is much more common and found in approximately 6-30% of the population. celiac disease and NCGI both require a gluten-free diet for life.

Best wishes.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi Kendall2,

 

The advice to stick with whole foods is good. Avoiding spice blends or seasoning mixes is good too.  It's safer to use individual spices.  You could try cutting out dairy for a week and see if it makes any difference.  Lactose intolerance generally causes bloating and diahrea.   There is a possibility of casein intolerance also but most people don't have that.  Sticking with simple foods with not many ingredients is also good.

 

If he hasn't been gluten-free for very long, then it is likely he will be having adjusting symptoms.  It can take a while for the body to adjust to eating gluten-free and the gut bacteria to stabilize.  Avoid sugar can help with that and avoid some bloating.

 

Cross contamination (CC) can also be a problem.  Using the same peanut butter, mayo jar, or butter can spread gluten around.  Shared toasters, colanders, wooden cutting boards can also be a problem.  Vitamin pills can have gluten in them and also medicines.  Even tea can have gluten sometimes.  So anything processed needs to be checked.  It is good to avoid  things with more than 3 ingredients on the nutrition label.  Although that isn't always possible, it's a good goal.

 

Meat and veggies is great way to go.  Nuts and fruits are good too.   But be sure they are safe nuts.  Planters will label for gluten content.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,551
    • Most Online (within 30 mins)
      7,748

    Newest Member

    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.