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

Trying The Challenge


aknapp1978

Recommended Posts

aknapp1978 Newbie

Hello everybody,

I posted a couple of weeks ago that I had a celiac test (ALL of the symptoms except the weight loss) and it came back negative. I have since gone to an allergist. They tested me for all of the major food allergies (milk, wheat, soy, dairy, corn, yeasts, sugars) and the only thing that came back positive was a possible slight allergy to milk.

So, I am going to follow everybody's advice and try gluten free. The allergist's nurse told me (for the milk) to avoid all cassein for one week and then overload on it on day eight to see if there are any repercussions. Knowing how my body reacts to anything, I am dreading day eight. I am also starting South Beach to help regulate some hormone problems, so I figured this is a good time to do it all since they all basically limit carbs for two weeks. As long as I am doing the cassein, I'm going to add gluten in too.

What can I expect during this Gluten-free Casein-free week? Should I start to feel better after a few days or will it take longer than that? I'm scared that it may come back negative (i.e. on day eight I'm fine.) People think I am crazy that I would be so excited about finding out that I can't tolerate gluten and/or cassein, but at this point I think I would give up just about anything to get rid of this!

:D Mandy


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



Celiac.com Sponsor (A8-M):



Rusla Enthusiast

Your not crazy, it is because you are excited to find out what makes you feel better and not worse. Good luck with your week. Remember the blood test can come up negative even if you are positive. Some people see changes immediately in the week and some don't . I definitely saw changes in a few days, then I saw a reversal and found out I had accidently been glutened. Casein is a big problem also, why they add it I will never know.

RiceGuy Collaborator

I would not be surprized if your hormone problems are due to the gluten too. If it were me, I'd do gluten-free first by itself, and go from there. You should avoid casein too of course, not only because it was recommended, but because many who are gluten intolerant find they can't take casein. It may be that once your system recovers enough, that casein would be tolerated. It just depends on your system. As for the carbs, I need those, so I wouldn't want to avoid that unless there was a good reason.

I began to notice improvement only after about six months. However, I have extensive damage from what I can tell, so that would explain it. Recovery is very very slow, but obvious enough to know it's working.

I don't know about the overload idea though. It doesn't take much of the wrong stuff to make many members here quite ill. If I have even a small taste of wheat I'm in for a rough week at least.

darkangel Rookie

Eliminating gluten and casein made a huge difference for me very quickly. I went from multiple bouts of gut wrenching cramps and diarrhea per day to almost perfect bowel movements a couple of times a day. I'd say the transition only took a few days.

CMCM Rising Star

I haven't done any tests yet, but I also had all the symptoms except for weight loss. I started a gluten free/dairy free (mostly) diet the day after Thanksgiving. I also eat virtually no sugar. I definitely noticed a big difference within a few days, although I still don't feel perfect. You mentioned the South Beach Diet.....I'm more or less doing Atkins, which is similar, but I do have a 1/2 grapefruit or an apple here and there....I just can't go without any fruit. But other than that, I eat mostly veggies, salads, some meat and fish, I only drink water or an occasional black tea w/Splenda. So while I don't feel what I would consider "perfect", I do feel enormously better. About 3 years ago I did a very strict Atkins induction program for 5 or 6 weeks, and it shocked me at the time how great I felt. I never connected that to the fact that I ate neither gluten nor dairy of any kind. Now when I look back, I can see the connections.

As for testing, I just think it's not entirely accurate yet. Tests don't show everything. They made a big to do about the prostate cancer blood tests a few years back, but now they are back-pedaling somewhat and saying "well, maybe it doesn't show everything." Ultimately, the real test is how you feel when you eat certain foods. If you've always had problems, elimination type diets are great because you can find out exactly what bothers you. I have always, as long as I remember, had a "sensitive" stomach. I know when I eat certain things including wheat based products, and also dairy, that I will pay for eating it. Sometimes it's worse than others, and sometimes, oddly, I don't react as much as I think I will.

For me, I can see a careful diet works wonders (aside from improved digestion, my chronic asthma type symptoms/chronic cough just suddenly evaporated), but I really want to know if I actually have celiac because my mother does and therefore I have a better than average chance of having it, and if I do have it I have to consider the intestinal damage that could occur from eating gluten now and then. If I don't have celiac, then choosing these foods or not is a slightly different matter.

I guess I would advise you to eliminate gluten and stick with it for a month at least and see what happens. If a lot of your symptoms go away, that should tell you more than an often imprecise blood test. If you think about it, doctors are mostly pretty clueless about celiac, so why should the blood test be considered a "gold standard" of diagnosis? In a related vein, for 20 years I've had fairly textbook symptoms indicating mild asthma. I've been tested for asthma, they always say I don't have it, yet I have what certainly resembles asthma and I have to deal with it. My conclusion is now that perhaps my asthma type symptoms were caused by ingestion of gluten and/or dairy, or both, because removing them from my diet changed things. I don't need a doctor or test to confirm that result!

Hello everybody,

I posted a couple of weeks ago that I had a celiac test (ALL of the symptoms except the weight loss) and it came back negative. I have since gone to an allergist. They tested me for all of the major food allergies (milk, wheat, soy, dairy, corn, yeasts, sugars) and the only thing that came back positive was a possible slight allergy to milk.

So, I am going to follow everybody's advice and try gluten free. The allergist's nurse told me (for the milk) to avoid all cassein for one week and then overload on it on day eight to see if there are any repercussions. Knowing how my body reacts to anything, I am dreading day eight. I am also starting South Beach to help regulate some hormone problems, so I figured this is a good time to do it all since they all basically limit carbs for two weeks. As long as I am doing the cassein, I'm going to add gluten in too.

What can I expect during this Gluten-free Casein-free week? Should I start to feel better after a few days or will it take longer than that? I'm scared that it may come back negative (i.e. on day eight I'm fine.) People think I am crazy that I would be so excited about finding out that I can't tolerate gluten and/or cassein, but at this point I think I would give up just about anything to get rid of this!

:D Mandy

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748

    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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.