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

5 Months, 20% Improvement

arial12bold

Recommended Posts

arial12bold Rookie
arial12bold
Posted

Hello,

yesterday I finished my 5th month of gluten-free/dairy-free diet and if look back I can say that I've obtained a 20-25% improvement of my symptoms (mostly GI symptoms)

I started the diet even before testing with enterolab because I started reading alot about food-intolerances and my symptoms were just the same (constipation, bloating, stomach aches, indigestion etc...)

A few weeks ago I got the enterolab results which confirmed the suspects: gluten intolerance, casein intolerance and presence of DQB1 (allele 1 and 2) genes (gluten intolerance genes)

Question 1: I was hoping to recover faster than this... 5 months are quite long and I feel like there's still a lot to do. Do you think it's "normal" ? Yeah I know, everyone is different :) I am just wondering what's the average time

Question 2: Since I am gluten-intolerant but not celiac I guess my villi shouldn't be damaged ( transglutaminase IgA = 9 units, enterolab says no damage ) So what's happening in the intestines in this case? Is it a question of inflammation etc...?

Question 3: Since I have 2 copies of the gene that predisposes to gluten sensitivity, does it mean that I've been intolerant since day one? I didn't have particular symptoms until age 17-18. From there I slowly started having various skin and GI problems. Today I am 33. Maybe that can partially explain the slower recovery??

Question 4: any tips for speeding up the process a bit? herbs? supplements? I am currently taking gluten/dairy free probiotics which helped a little. My doc said to take them for 2 months but I read it's possible to take them for longer periods, especially in particular cases like mine.

Thanks in advance :)

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Hi, and welcome to this board. Maybe you have intolerances other than gluten and dairy? Enterolab can't confirm celiac disease, only gluten intolerance. Meaning, that you may have celiac disease, but are at least gluten intolerant. It doesn't really matter, though, because the treatment is obviously the same.

And yes, since you have two gluten intolerance genes, you would have been gluten intolerant from birth. It just took quite a few years for the damage to get bad enough for you to have obvious symptoms. A lot of people with badly damaged villi have hardly any symptoms! It's not unheard of to have no obvious symptom other than for instance anemia, with your villi being completely flat.

Enzymes can help recovery, as well as glucosamine sulfate. The latter is good for joints, but also helps heal your gut.

Also, have you made sure you eliminated all gluten sources, like toasters, wooden cooking spoons, scratched non-stick cookware, wooden cutting boards, etc., as well as personal care products (many shampoos, soaps, lotions, lipsticks, etc. contain things like wheat germ or oat bran)? And many vitamins and medications have gluten, too. If you still get low levels of gluten, you wouldn't get completely better.

arial12bold Rookie
arial12bold
Posted
  • Author
Also, have you made sure you eliminated all gluten sources, like toasters, wooden cooking spoons, scratched non-stick cookware, wooden cutting boards, etc., as well as personal care products (many shampoos, soaps, lotions, lipsticks, etc. contain things like wheat germ or oat bran)? And many vitamins and medications have gluten, too. If you still get low levels of gluten, you wouldn't get completely better.

Hi, and thanks for your response.

About personal care products... I already read some stuff about it, question is... is there a way that I can discover possible traces of gluten from just the label?

Example, my wife uses an hydrating face cream which is mostly based on natural ingredients, however many of them have very "exotic" names, and I can't really say if they could be sources of gluten...

Sooo... every kiss on her cheek could be a potential killer?! :blink::) Seriously, I've got to better check.

About shampoos, could gluten be absorbed by the head skin? This one sounds new to me

Another question, what's the problem with wooden cooking spoons?

Thanks

AndreaB Contributor
AndreaB
Posted

Did you have the soy panel done by enterolab? Soy can cause just as much trouble as gluten with the intestines. Was your fecal fat score over 300? If you eat soy try cutting it out for 2-4 weeks and see how you feel. If no different add it back in. Dairy could be another culprit, did you have the casein panel by enterolab too?

arial12bold Rookie
arial12bold
Posted
  • Author
Did you have the soy panel done by enterolab? Soy can cause just as much trouble as gluten with the intestines. Was your fecal fat score over 300? If you eat soy try cutting it out for 2-4 weeks and see how you feel. If no different add it back in. Dairy could be another culprit, did you have the casein panel by enterolab too?

I did the test for gluten and casein. Both positive Actually, casein = 10 units... so it's borderline. I am excluding that too, I don't tolerate dairy too well.

Didn't test for soy, but yes I am staying away from it too.

It seems that people intolerant to gluten/casein also have problems with soy because it contains proteins that are similar to the gluten one

Fecal fat score was 96

schuyler Apprentice
schuyler
Posted
About shampoos, could gluten be absorbed by the head skin? This one sounds new to me

Another question, what's the problem with wooden cooking spoons?

Thanks

The problem with shampoo is that when you use it, it gets on your hands and if your hands touch your mouth it could cause a problem. Also, if you have long hair, your hair could touch your face or mouth, which can gluten you.

Wooden cooking spoons (and most other cooking things) usually have gluten trapped in them. And since wood absorbs alot of things, there is probably alot of gluten in it (washing it is not enough to get rid of all of the gluten). At my house, I have my own cooking utensils and pots and pans because gluten could very easily be hidden in any cooking accessory. Honestly. the only thing that I use that has been exposed to gluten is my toaster oven, but always line that with foil before I use it.

Good luck with everything and I hope you feel better soon.

arial12bold Rookie
arial12bold
Posted
  • Author

thanks for the informations :)

Is there any particular ingredient/additive that I should look for in the shampoo label to know if it contains gluten? Or are there specific gluten-free brands?

thanks

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

Celiac.com Sponsor (A8-M):


gfp Enthusiast
gfp
Posted

My mum had 6 months with only a small improvement and then finally got really serious, stopped giving the dog buscuits and taking risks ... her improvement after was much faster.

I don't know if it was once the villi are a bit better and you adsorb better nutrients it will accelerate OR cutting out possible contamination like others have said or a bit of both.

Either way ... you sound like you are doing well and things will get better.

Ursa Major Collaborator
Ursa Major
Posted
thanks for the informations :)

Is there any particular ingredient/additive that I should look for in the shampoo label to know if it contains gluten? Or are there specific gluten-free brands?

thanks

I think the ingredients on personal care products are usually pretty obvious, like barley extract, wheat germ oil or oat bran. Somebody correct me if I'm wrong!

The brand I use is Dove shampoo and conditioner, because it doesn't have gluten or anything else I am intolerant to. And I use Ivory soap, for the same reason. But there are other brands that don't have gluten, unfortunately for me they also contain high levels of salicylates (precisely for the very reason that they're made from natural ingredients, which I can't tolerate).

schuyler Apprentice
schuyler
Posted

I also use Dove brand shampoo because I know that it is gluten-free.

lovegrov Collaborator
lovegrov
Posted

Another way your healing can be slowed a lot is if you eat out much. Even at careful places, contamination chances are quite high.

If you haven't been taking a probiotic, you should find one that's gluten-free/CF and start taking it. You could have some bacterial overgrowth.

richard

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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
      Taken Seriously

      By Scott Adams · Posted

      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
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      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
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      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
      Protein or fat?

      By Scott Adams · Posted

      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
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      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.