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

What Now!

peaches102984

Recommended Posts

peaches102984 Rookie
peaches102984
Posted

Hi all,

This is becoming too much.....my husband had his endo. today, and he is not very happy. You see the doc. told him that he don't see celiac disease as the answer for these last 4 years of diarrhea! I told him I am at a loss of words. They took biopsies and said that might rule out something. But over all colon normal!??? He is upset and says this makes him feel more like a hypochondriac. The doc. said that my husband smoking (& not cigarettes) could have something to with it. I just don't see this at all. He usually has to smoke to relax from the cramps and frequent diarrhea! I also don't get when he don't eat gluten for a 2 week stretch he feels better? He says its not a huge difference. Regarding the procedure....he was combative (& he is a large man). He hit the anast. then I think 2 nurses. He bit his lip during the procedure also. Its a bad day and bad time I don't know what do do anymore. Anyone out there know what my husband is experiencing? :o:huh::(

Casey

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

Celiac.com Sponsor (A8-M):


hathor Contributor
hathor
Posted

Did he have an endoscopy or a colonoscopy? Your reference to their finding a normal colon -- plus your husband's biting his lip during the procedure (impossible with a tube down your throat I would think) -- makes it sound like the latter. A colonoscopy cannot diagnose celiac, because the damage is to the little intestine, not the colon.

Even assuming an endoscopy was done, they can't tell be simply looking unless the damage is really bad. They have to look at the biopsied tissue under a microscope, which apparently hasn't happened yet.

It is also possible to have a false negative. The damage may be missed or not enough damage may have occurred yet. If he feels better with not eating gluten, that is diagnostic right there.

How long has your husband gone without gluten? One has to be eating it for the endoscopy to be determinative.

peaches102984 Rookie
peaches102984
Posted
  • Author

Thank you for replying.

We have been eating a gluten free diet but we have also have cheated. The night before his doctors appt. which was wed. the 13th we ate pizza, then after the appt. we ate sholotskys (Don't know how its spelled.). Last night (the night after the appt.) we had mcdonalds. I know that when he eats gluten he has to go to the bathroom within about 20 mins if not sooner from eating it and the cramps are well are right after usually. The doc just don't think that celiac is the answer and I have been on the internet for the last 3 hours trying to find anything between smoking pot and diarrhea. I am finding nothing. We both don't understand why he would say his diarrhea is from pot we both have smoked for along time and I don't see why his body would just mimic the symptoms of a celiac. If he don't smoke he is miserable. I would much rather him smoke than be out of it from prescription medication. Which also causes more deaths than pot. I don't like this and I don't know what else to do. Other than wait for the biopsies to come back and pray they show what the naked eye couldn't see.

Casey

kbtoyssni Contributor
kbtoyssni
Posted

If you've been mostly gluten-free for the past few months, you probably won't get a positive biopsy. You have to be eating about three slides of bread for several months to even hope to get a positive. And scopes are notorious for false negatives. They only biopsy a few places in the intestine and those places may or may not be the ones that show damage. I would try the diet - you have nothing to lose. And if your husband does have celiac, then I think a negative is a good thing. It means he doesn't have a lot of damage yet. You could try enterolab if you want a more official diagnosis than dietary response.

neesee Apprentice
neesee
Posted

Dh worked with a man whose dr. told him the same thing about pot. He had miserable stomach and intestinal problems. His dr. explained that because pot is not regulated by the government, the growers spary it with all sorts of pesticides and insecticedes.When it is smoked, it is injested and poisons the digestive system.

neesee

peaches102984 Rookie
peaches102984
Posted
  • Author

Thanks you all for replying.

Now my husband is leaning toward a really severe case of IBS can anyone relate? As far as the pot. The doc said that because he was been smoking soo much and for so long it has been know to give one diarrhea and stomach pains. I said I am shocked and don't understand? Because his stomach cramps have been sooo bad that pot seemed to be the only pain relief he had gotten in some hours if not days. I do understand about the different pesticides and all, but I just don't believe that pot is the reason for his stomach problems. I am pretty gullable but not that gullable. I even tryed to research it, and the only thing I seemed to come up with....was people telling there storys about how they smoke to ease the pain from MS or what not. I am not trying to be a pot activist or anything....I just know from seeing it with my own eyes pot is not the reason for my husband stomach cramps or diarrhea. He don't wanna be the gluten-free diet if he don't have to be. He said its the hardest diet to be on. Which it is pretty difficult. But what if all this is just false negatives or what if it is really a server case of IBS?

If anyone can relate or talk to me please do I am up for discussion I guess.

Thanks

Casey

babygirl1234 Rookie
babygirl1234
Posted

have him try being gluten-free and if he doesnt get D from it then he has his answer

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

Celiac.com Sponsor (A8-M):


peaches102984 Rookie
peaches102984
Posted
  • Author

Thanks all for replying. Unfortunatly He will not do the gluten-free diet unless that is what the doc. says is wrong. I am not having a very good day with my husband today. He is being selfish. I search for info on IBS and Celiac and show him and he ignores me then the next day he says its because his stomach hurt that is why he didn't listen. He don't seem to be doing anything to better himself. He drank last night a bottle of Paul Masson (brandy) with our roommate. My 3 year old little girl has to listen to him complain all the time "my stomach hurts" and she does it to now more than ever. I went for along time thinking that he was lieing. Now its been about a year since I have tried a different approach with all this by looking the info up my self and showing him as I stated above and this morning he told me that no one made me do it and that I could stop. He says that he will just take the IBS meds and hope they work. I just don't now what to do I am tired inside and tired of him telling me he hurts and isnt changing his daily habits to better himself.

Casey

babygirl1234 Rookie
babygirl1234
Posted

he needs to listen because if he doesnt he'll never heal, and he'll be even sick then he is now, he isnt going his body any good by ingoring the problem. has the doctor done a endorscopy? and a biopsy? and did they do a celica panel?

  • 4 weeks later...
anaclare Newbie
anaclare
Posted

I completely understand - my husband had a colonoscopy, and that docotr decided he didn't have celiac - a screwed up colon, which (of course) had no cause! But, he feels so much better not eating gluten, it is hard to rule out celiac. So - see if you can get him to focus on the symtoms, not the diagnosis.

joystar6 Newbie
joystar6
Posted

I

Archived

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

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


  • Member Statistics

    • Total Members
      131,555
    • Most Online (within 30 mins)
      7,748
    JMF
    Newest Member
    JMF
    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.