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

Diagnosed With Celiac And Still Sick?

cavegirl

Recommended Posts

cavegirl Newbie
cavegirl
Posted

Hey guys,

So, like all of you, I was, unwillingly, thrust into the confusing world of Celiac Disease. Let me just give you some background history.

Andrew (my fiance) and I, began the "Paleo Diet" (gluten, sugar, grain, dairy, artificial flavor free, organic diet) on April 1, 2014. The reason for our lifestyle change was because Andrew had been experiencing constant debilitating nausea and stomach pain for months. (It was something he has delt with since he was a child, but recently, things got a lot worse.) I figured that diet change would help remedy the situation. Around this time, he also (finally!) got a referral to see a GI specialist. After spending only a few short minutes with this new doctor, she decided to send him for an endoscopy and a gluten tolerance test. We had already been paleo (and gluten free!) for about 2 weeks by this time. The doctor told him to eat gluten again regularly for about a week before his tests.

 

Both tests confirmed the worst. It was Celiac.

Once diagnosed, that was it. We didn't get a follow up appointment. We weren't referred to anyone to talk about what the next steps were, and how this could affect our lives. We were just thrown out, with this confusing diagnosis, left to fend for ourselves.

Immediately after the tests, we resumed our gluten free, and paleo diet. We have now been on this diet for 3 months, and yet the symptoms continue.

They seemed to disappear for awhile, but now Andrew is taking Phenergan daily again. He seems to do okay throughout the day, but every evening, like clockwork, (around7 PM), he is overcome with the sweats, and crippling nausea.

 

Can anyone shed some light on what might be causing this? His doctor is, as always, at a loss, and just keeps giving him Phenergan, which just doesn't cut it because we want answers.

 

Thank you so much, and I am really excited to be part of this community!

 

Savannah&Andrew

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

Celiac.com Sponsor (A8-M):


GF Lover Rising Star
GF Lover
Posted

Hi Savanna and Andrew and Welcome to the Forum.

 

Start with the Newbie 101 thread under the Coping Section.  This will give you the proper starting point and procedures, read the links too.

 

Also, look for a good Probiotic.  Eat only Whole Foods for a while and skip the processed.  Drink lots of water.  Look into a digestive enzyme if you think it might help.  

 

Colleen

beth01 Enthusiast
beth01
Posted

Sorry to hear that your BF is so sick.

 

I would check to make sure he isn't some how getting cross contamination from some where.  Gluten is everywhere even where you don't expect it.  It can be in hair products, toothpaste, mouth wash, makeup, pet food.  Like Colleen said, read the newbie thread and learn about cross contamination.  

 

Your boyfriend also needs to be checked for deficiencies and followed by a MD.  If his doctor isn't sure what to do, be referred to see a Gastroenterologist. Three months down the road, you probably have a good handle on the diet but maybe seeing a dietician or nutritionist might help.  He might also have other food intolerances.  Dairy is a big one after diagnosis, it is digested on the villi in the small intestine and most celiacs have blunted villi and therefore can't digest dairy.  Soy and corn seem to be others that are common.  An elimination diet might be needed.

 

Does he still have his gallbladder and appendix?  It seems like a lot of Celiacs have problems with those. They never seem to work right.

cavegirl Newbie
cavegirl
Posted
  • Author

Sorry to hear that your BF is so sick.

 

I would check to make sure he isn't some how getting cross contamination from some where.  Gluten is everywhere even where you don't expect it.  It can be in hair products, toothpaste, mouth wash, makeup, pet food.  Like Colleen said, read the newbie thread and learn about cross contamination.  

 

Your boyfriend also needs to be checked for deficiencies and followed by a MD.  If his doctor isn't sure what to do, be referred to see a Gastroenterologist. Three months down the road, you probably have a good handle on the diet but maybe seeing a dietician or nutritionist might help.  He might also have other food intolerances.  Dairy is a big one after diagnosis, it is digested on the villi in the small intestine and most celiacs have blunted villi and therefore can't digest dairy.  Soy and corn seem to be others that are common.  An elimination diet might be needed.

 

Does he still have his gallbladder and appendix?  It seems like a lot of Celiacs have problems with those. They never seem to work right

 

 

What would be the easiest way to find out all the foods he is allergic to?

 

He still has both his gallbladder and appendix, though his doctor has mentioned his gallbladder before, but he didnt' really say anything else about it, so I'm not sure if he ruled that out or not. We have an appointment to see his primary physician this week to talk to him about the problems he's been experiencing. Really hoping to get him healthy.

beth01 Enthusiast
beth01
Posted

Look up information on doing an elimination diet.  Basically you start a diet with a "safe" food list, basic bland foods that aren't bothersome and eat them for three days and nothing else.  Then you add one new food every three days, eating said food three days in a row ( the rawest form if possible), keeping a journal of all foods and drink and any symptoms observed.  Then you can see if there is a pattern of symptoms that would be related to a food intolerance. So if you start with chicken, bananas and rice for three days with no symptoms and then add soy and have headaches for three days, it's probably a problem with soy.

 

I haven't tried an elimination diet so far, I really want to make sure I have gone at least a month without a glutening ( I was just diagnosed three months ago) so I am not getting symptoms mixed up and give up a food I really don't need to.  I am going to become a hermit so no chance of glutening.

 

I had problems with both my gallbladder and appendix, neither of which were "surgical" according to the doctors I had seen.  My gallbladder was non functional (slightly inflamed) and my appendix was inflamed for 5 months before they took it out to find out it was impacted with stool.   

beth01 Enthusiast
beth01
Posted

I would also suggest eating only whole foods for a while.  If your BF hasn't had an endoscopy and doesn't know if his intestines are damaged, they take a while to heal and complex foods can cause some stomach discomfort.  I have noticed that if I eat a wide variety of foods in a day, I feel sick.  I have been trying to limit myself to three ingredients a meal.  That has been helping my stomach discomfort.

GottaSki Mentor
GottaSki
Posted

Welcome Cavegirl!

An elimination diet is a wonderful idea, but I would encourage complete elimination of gluten for a period of at least three to six months before tackling a full elimination diet.

Early days in healing can simply be wonky. Any food can be irritating during this time and we often are chasing our tails trying to figure out what causes different symptoms.

If one strongly reacts to a food other than one containing gluten during these early days...ie...dairy is often hard on our systems while healing. Then remove that food for a while and try it again once the system settles a bit.

A food/symptom log is the best tool if there are frequent problems...otherwise take these first few months to become an expert on where gluten is and is not!

Hang in there :)

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Ps... I also strongly encourage folks to eat only whole foods, nothing processed....even the certified gluten-free foods can be tough on the healing system and should be used as occasional treats rather than staples.

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.