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

Diagnosis

lc1333

Recommended Posts

lc1333 Apprentice
lc1333
Posted

Ok, so here it is...I have many of the symptoms of celiac, went to gastro doc, she did blood tests, the full celiac panel and upper endoscopy. the bloodwork came back normal, but the endoscopy showed vili damage, so then we did a breath hydrogen test and that came back indicative of small intestinal bacterial overgrowth. so she put me on antibiotic to kill the bacterial overgrowth, aside from the fact that it gave me a yeast infection, it constipated me so when i was done with the round of antibiotics and three days later was sick again, the diarrhea and constipation was a really bad combination. so then she put me on probiotics, since the antibiotics did not give me the long term (4-6 months) relief she believed it would, i did actually feel better on the probiotics for about ten days and now i'm back to feeling constantly sick. i'm so frustrated, just like everyone else here who is afraid to eat. any ideas??? am i just grasping at straws here???

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Ok, so here it is...I have many of the symptoms of celiac, went to gastro doc, she did blood tests, the full celiac panel and upper endoscopy. the bloodwork came back normal, but the endoscopy showed vili damage, so then we did a breath hydrogen test and that came back indicative of small intestinal bacterial overgrowth. so she put me on antibiotic to kill the bacterial overgrowth, aside from the fact that it gave me a yeast infection, it constipated me so when i was done with the round of antibiotics and three days later was sick again, the diarrhea and constipation was a really bad combination. so then she put me on probiotics, since the antibiotics did not give me the long term (4-6 months) relief she believed it would, i did actually feel better on the probiotics for about ten days and now i'm back to feeling constantly sick. i'm so frustrated, just like everyone else here who is afraid to eat. any ideas??? am i just grasping at straws here???

If you were tested and had villi damage, I would, for the time being consider it a gluten issue as well as a bacteria overgrowth.

Try the diet for at least two months with true dedication and my guess is that you will feel tremendously better. If you DO have a positive dietary results....you have your answer.

Start simple with meats, seafood, rice, potatoes, fresh veggies and fruit. Limit your spices and limit your dairy(temporarily). We can help you with options if this is your choose or direction.

The bottom line is to feel better and this might be a good step toward good health.

And welcome! :D

lc1333 Apprentice
lc1333
Posted
  • Author

If you were tested and had villi damage, I would, for the time being consider it a gluten issue as well as a bacteria overgrowth.

Try the diet for at least two months with true dedication and my guess is that you will feel tremendously better. If you DO have a positive dietary results....you have your answer.

Start simple with meats, seafood, rice, potatoes, fresh veggies and fruit. Limit your spices and limit your dairy(temporarily). We can help you with options if this is your choose or direction.

The bottom line is to feel better and this might be a good step toward good health.

And welcome! :D

Thanks for the advice...

I'm gonna try this. The one thing I am afraid of, which I guess I shouldn't be, is that almost 4 years ago I quit drinking soda to lose weigh (totally robbed on that one, didn't lose a pound), then when I did try to drink it, it made me violently ill, then any sugared drinks began to make me ill for days, now the only thing I can drink is water, everything else makes me so sick. I'm so afraid that when I limit my diet, it'll just get more and more restricted till I can only eat chicken and carrots or something. I guess I'm just whining, but I do like food, and I feel like I'm losing that. It's kinda depressing actually. But on the other hand, I'm so tired of the cramping and pain and diarrhea, I know I should be grateful I have a potential answer, it's just hard. I'm also very low income with four kids, so it's not like I can afford to go buy gluten-free food, I just gotta eat what I have available. I know I'm pouting, I apologize...

ciamarie Rookie
ciamarie
Posted

For the most part, if you start feeling better on a gluten-free diet, your list of foods that you're sensitive to should go down as your digestion heals.

beachbirdie Contributor
beachbirdie
Posted

Ok, so here it is...I have many of the symptoms of celiac, went to gastro doc, she did blood tests, the full celiac panel and upper endoscopy. the bloodwork came back normal, but the endoscopy showed vili damage, so then we did a breath hydrogen test and that came back indicative of small intestinal bacterial overgrowth. so she put me on antibiotic to kill the bacterial overgrowth, aside from the fact that it gave me a yeast infection, it constipated me so when i was done with the round of antibiotics and three days later was sick again, the diarrhea and constipation was a really bad combination. so then she put me on probiotics, since the antibiotics did not give me the long term (4-6 months) relief she believed it would, i did actually feel better on the probiotics for about ten days and now i'm back to feeling constantly sick. i'm so frustrated, just like everyone else here who is afraid to eat. any ideas??? am i just grasping at straws here???

You might find some help with the Open Original Shared Link or the Open Original Shared Link. Both were created to help people with bacterial issues in the gut and are both very successful in a large number of people. My daughter-in-law is one of them. She was very sick for many months until she started the SCD diet.

Basically these diets shun most simple carbs (no rice, potatoes, other grains/seeds of any kind), limited or no dairy, no sugars or other sweeteners except for honey) and rely on nuts, meats, veggies and fruits. By their nature, they are also gluten-free.

Just something to consider, not saying it fits everyone, and not making any medical recommendations since I am not a medical professional.

lc1333 Apprentice
lc1333
Posted
  • Author

You might find some help with the Open Original Shared Link or the Open Original Shared Link. Both were created to help people with bacterial issues in the gut and are both very successful in a large number of people. My daughter-in-law is one of them. She was very sick for many months until she started the SCD diet.

Basically these diets shun most simple carbs (no rice, potatoes, other grains/seeds of any kind), limited or no dairy, no sugars or other sweeteners except for honey) and rely on nuts, meats, veggies and fruits. By their nature, they are also gluten-free.

Just something to consider, not saying it fits everyone, and not making any medical recommendations since I am not a medical professional.

Thanks for the suggestion. I found the SCD on the SIBO (small intestinal bacterial overgrowth) site. I actually did start the diet yesterday. It's kinda bizarre to think about - I haven't had any grains, dairy, or sugar in the last 48 hours. And surprisingly enough, other than a headache (which I have quite often anyway) I feel ok. My stomach has been it's normal crampy self, but nothing worse than I'm used to. I'm guessing I will continue to feel this way until my intestines heal??? Today I'm really craving chocolate and I'm getting kinda desperate, but I've kinda gotten to a point where I feel like I am just poisoning myself every time I eat any breads or chocolate.

I guess I'm kinda confused about the diagnosis thing though...The doc said I have the intestinal damage indicative of celiac, but not the blood work, so no celiac?? And I've also read that Celiac can cause SIBO??? But not the other way around - SIBO doesn't cause intestinal damage...so I don't know, and she doesn't even seem to entertain anything other than long term antibiotics. And I don't think I can do that.

beachbirdie Contributor
beachbirdie
Posted

Thanks for the suggestion. I found the SCD on the SIBO (small intestinal bacterial overgrowth) site. I actually did start the diet yesterday. It's kinda bizarre to think about - I haven't had any grains, dairy, or sugar in the last 48 hours. And surprisingly enough, other than a headache (which I have quite often anyway) I feel ok. My stomach has been it's normal crampy self, but nothing worse than I'm used to. I'm guessing I will continue to feel this way until my intestines heal??? Today I'm really craving chocolate and I'm getting kinda desperate, but I've kinda gotten to a point where I feel like I am just poisoning myself every time I eat any breads or chocolate.

I guess I'm kinda confused about the diagnosis thing though...The doc said I have the intestinal damage indicative of celiac, but not the blood work, so no celiac?? And I've also read that Celiac can cause SIBO??? But not the other way around - SIBO doesn't cause intestinal damage...so I don't know, and she doesn't even seem to entertain anything other than long term antibiotics. And I don't think I can do that.

I'm surprised your doctor didn't call it celiac after seeing the damaged villi. That is still considered the "gold standard" of celiac investigation. False negatives are very common in the bloodwork. This forum is heavily populated with people who had negative bloodwork and positive intestinal biopsies. There are many others who do not fit the "classic" mold, yet the dietary changes gave them healing.

Though not technically "legal" on the SCD diet, you may be able to add unsweetened cocoa/chocolate back to your diet at some point. My daughter-in-law is so grateful that her body had allowed her this! She has figured out how to make scrumptious, fudgy brownies using almond flour, honey, and unsweetened cocoa. But I would follow the diet strictly for at least a month before trying the cocoa.

And it's hard at first, but stick with it! :) It can take a year or more to completely heal the gut from SIBO.

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

Celiac.com Sponsor (A8-M):


domesticactivist Collaborator
domesticactivist
Posted

Look into GAPS! It is designed to restore the gut's balance of flora. It may make a world of difference for you. There is an introduction diet that starts out very basic whith easily digested, nutrient rich foods. Then you add in naturally probiotic foods and other foods one by one. It is totally grain and starchy vegetable free, and starts off with no fruit. You starve off the bad guys and introduce the good guys.

lc1333 Apprentice
lc1333
Posted
  • Author

Look into GAPS! It is designed to restore the gut's balance of flora. It may make a world of difference for you. There is an introduction diet that starts out very basic whith easily digested, nutrient rich foods. Then you add in naturally probiotic foods and other foods one by one. It is totally grain and starchy vegetable free, and starts off with no fruit. You starve off the bad guys and introduce the good guys.

Thanks for all of the great advice!

I have talked to so many people in the last couple of days because I really reached a point of complete intolerance of all of this (ha!! I made a joke!!! get it - intolerance?!?!)

Anyway, I have called other doctor's offices and talked to the nurses there, who talked to the docs, I've talked to y'all, I've talked to a couple of nutritionists and everyone agrees - I have most likely have celiac disease since I had a positive biopsy, and that the bacterial overgrowth issue is probably caused by the celiac completely screwing up my intestines. I'm not really sure just why my doc said I didn't other than that she is not familiar with celiac disease at all. And I don't know what else I could do to verify a diagnosis...

So, I'm gonna go on the gluten free diet, which is quite a bit more liberal than the Specific Carbohydrate Diet I had been on for the last two days. I was really afraid to eat bread today, even gluten free bread, I am so glad I didn't get sick afterward!!! YAY!!! When I think about it, it seems really odd to think that if I just stick to this diet, I won't be sick like that ever again (within reason). I remember being 5 years old and my babysitter giving me pepto bismol because I was sick after I ate, I don't ever remember a time not being afraid to eat...it's kinda exciting!!!

nora-n Rookie
nora-n
Posted

at least 20-30% of biopsy diagnosed celiacs have negative blood tests.....according to literature. Even more with patchy celiac.

Archived

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

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


  • Member Statistics

    • Total Members
      131,547
    • 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
      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.