Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Started This 30 Years To Late, Wish We Had Known Much Earlier :(


New-To-This

Recommended Posts

New-To-This Rookie

:( Unfortunately my dear husband ended up in the hosptial Saturday night. Long story short he will be there for most of the week. He has diverticulitis and diverticulosus as well as the small intestine so swollen it was blocked and causing sever pain. So sever that it took 2 doses of morphine to get it to a point where it was bearable. When he comes home he will be on a gluten free soft foods/ liquid diet for a month or longer. Hopefully that will clear up 30 years of damage. We will be seeing a specialist to see where we go after he's been on the liquid soft foods diet for a month.

He had the H1N1 flu and quit smoking about 10 weeks ago so his immune system was trying to adjust when he had his flare up a month ago. That is when we went on the gluten free diet. During most of this time as well as the last 30 plus years he has had bloody stools as his intestines where in such disarray. We think if we had known what was wrong years ago we might have been able to heal his intestines with the gluten free diet, but its been to long and to much damage had already been done, and that is why he ended up in the hopital.

I am hopeful we will be getting his system back on track and we WILL be continuing with the gluten free diet. After the pain he was in he said there is no way he will cheat on this diet if it will prevent this from eve happening again.

This is the first time he has been in the hospital since he was born over 50 years ago, so this has scared him quiet a lot.

Keep us in your thoughts and prayers and thanks again everyone for all your insight and help. I am sure I will be asking a lot more questions, as we live in a small town and are working with a small hospital until he is well enough to see the specailists. Any help with finding cream soups and soft foods that will be tastey and gluten free would be GREATLY appreciated.


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



Celiac.com Sponsor (A8-M):



ciavyn Contributor

If it's any comfort - a friend of mine was 65, and ended up in the hospital with similar issues. He almost died. They discovered it was celiac, put him on the a gluten free diet (I think his was liquid in the beginning, too) and he's back to traveling all over the world 80% of the year for his job for the past year, now 67 years old. He's who convinced me to look into this lifestyle change, and it's helped me tremendously. Hang in there.

lcarter Contributor

I can relate to the extreme pain your husband was in with swollen intestines and visits to the emergency room. No one ever thought of Celiac all those years, so finally had to figure it out for myself. If we had been born European it is far more likely that we would have been diagnosed much earlier, since celiac disease has been commonly treated there, especially the Scandinavian countries, for many, many years -- oh well, we have to live with what is. Sometimes, US medicine is not as great as it is hyped to be. As for the creamy soups....do you have a slow cooker? If not it will be of great help to you by making food prep soooooo much easier. I frequently make soups in mine. I put everything into the slow cooker in the AM and set it to cook on low all day. It's ready after 6-10 hrs, depending on the recipe. There are many easy to put together slow cooker recipes available on the internet. Also, I make 1 cup natural brown rice, 1/4 cup quinoa and 1/4 cup amaranth in the rice cooker [though this may not be on your husbands diet right away] to eat along with the soup. It makes a wonderfully easy and very nutritious meal. If you aren't familiar with quinoa and amaranth yet...you need to get aquainted with these fabulous gluten-free grains, which are two of the most nutritious grains known to man. They are a god-send for those of us with celiac disease. If your husband can tolerate dairy, don't forget custards and puddings, which can be nutritious too. Good luck!

twe0708 Community Regular

How horrible! So sorry and hope he gets better soon! I can't believe that when someone goes in to see their doctor about messed up bowels and stomach pains that they just don't run a simple blood test for Celiac. Instead they diagnose it as IBS or go home and take some Metamucil! How much can the test really cost! Makes me mad! Hope he gets better soon!

WW340 Rookie

Sorry for your husband's problems. I hope he will mend quickly.

Progresso has several soups that are gluten free, such as clam chowder, chicken corn chowder etc. There is a recent list here on the board. glutenfreeforum discussion

Gluten free mac n cheese would be good. I make my own, but some people like Amy's. Potatoes topped with cheese and sour cream would be good and soft. No meat lasagna.

Eggs are always my friend. I learned how to make omelets on the internet. An omelet is always good for breakfast, lunch, or dinner. Quiche can be made without a crust. Scrambled eggs are good. Egg salad, tuna salad, chicken salad would all be good.

GFinDC Veteran

Did they test him for celiac? Just curious, it sounds like he could definitely use a change of diet.

I suggest staying off dairy for now, as many celiacs do have problems with it, especially at the beginning of the diet. He should take a calcium and D pill though. There is calicum in a lots of foods besides dairy.

There is something called enteral food, that is a liquid nutrition some people use when healing.

Welda Johnson Newbie

I'm so sorry for what you and your husband have been going through, and will hope & pray that he is now on the road to recovery. I want to encourage you to be hopeful, because I am 65 and have had Celiac symptoms since age 8, however, as with your husband, it took many years to find out what the real problem was. I've been on a meats, fruits and vegetables diet for years, and often eat just fruit and vegetables. Such additives as casein, whey, yeast, msg, etc. can also cause problems. it seems that the simpler the diet, the better. I will remember to pray for you both, and if you have any questions, please feel free to email me at welda@att.net


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



Celiac.com Sponsor (A8-M):



New-To-This Rookie

Since we have been gluten free for a month now, we would have to go back on the glutens in order to be tested. :( He has had several blood tests and his blood sugar was a bit off, but after rechecks it came back normal. Also his white blood count is elevated but that is because of the circumstances. And his calcium was a bit low. Other than that everything is coming back normal or better than normal. So they have ruled out diabetes, kindney problems, pancreatic problems, spleen problems etc. I understand why they did this and am greatful that they want to be sure there are no other issues as well. He is in a small town hospital, but the docotr he has is wonderful, he admited right off he didn't know much about celiac and would get the test ordered. He came back 30 minutes later after doing a little checking on line and said "I'm sorry but I can't order the blood tests unless you go back to eating everything that's making you sick to begin with." He further stated he didn't think that was a good idea. Hard not to like a doctor who can say he doesn't know AND takes the time to do a little research! He also said he could help us get set up with a specialist for further down the road if needed after Mikes healed.

I really appreciate the web site! Thanks so much! That will definately help when he gets home. He likes the soups mentioned so that will make life easier for him. Mac & cheese has never been a favorite, so I'm not going to push it now either. We egg eats on a regular basis around here as we have hens that lay 12 to 14 a day :)

He was up walking today and had clear liquids for breakfast and lunch. He was pushing so they gave him soft food for supper and after to bites his gag reflex kicked in so tomorrow its clear fluids again. He at least is listening to what his body is telling him no matter how badly he wants to come home. He is getting bored with the hospital and says he can sleep better at home than at "Club Med". It amazes me how rude the other patients visitors can be, don't they remember they are in a hospital not at a party somewhere?!?!

Sorry had to blow a little steam there, lol!

We haven't had the blood test and Mike hasn't been in a hospital since tha day he was born, except to visit others so this is a new experience for him. He also hasn't been to a doctor since he was in 2nd grade and went to have ear wax removed.

We eat a lot of home grown fruits and vegeatbles as well as raise chickens for butcher and for eggs. We get a half a beef locally. so I can't help but wonder if we had been eating as much processed foods as most of the general population if he would have been sicker a lot sooner, or worse have died. The main things we need to change are the breads and flours I use. Even the seasonings I use are gluten free as luck would have it, lol! And we don't use most condiments or quicky foods. So cleaning out my foods wasn't as bad as I thought it would be. I sent a few things with our daughters in college. But most of what we had already fit in the guidelines of what ingredients are same, thank goodness.

I am so grateful for this web site and all the wonderful people who are teaching us what they have learned from their own experiences. Without you, newbees like us would be at a lost as to where to start. When our dietitian came in to see what we already knew, she was surprised by the information we had already found on our own thanks to people like you. I had several of the lists with me because I was afraid WE would be teaching them what was exceptable and what wasn't. We are fortunate to have a dietittian who has family with celiac and so is our small town hosptial. Although the doctors know theyt still have a lot to learn they also no they have a great dietitian who can help out the patients.

Exciting news today, for the squimish cover you ears..... Excited because my husband could pass gas, which means things are starting to move!!!!!! :) And hopefully the inflamation is starting to come down at least a little!

Anyway for me its late and I've had an exhausting few days, so good night all, and again thanks for all the great advice and well wishes!

GFinDC Veteran

That's good news New To This. The gluten challenge to get the blood tests to work is probably not a good idea, IMHO. If you want to get a test done, though, the Enterolab stool testing may be a better choice. The doctor (Fine) who does them says they show antibodies up to a year after starting the gluten-free diet. His tests aren't accepted by all mainstream doctors as diagnostic though.

But if he is feeling better and has no problem with sticking to the diet then more tests for celiac don't really matter. Some people want a positive test before they will commit to the diet.

Sounds like your diet is already pretty good. You might want to get some gluten-free flour mixes to try. I use Tom Sawyer brand gluten-free flour. There are several others like Jules flour and Better Batter that people like. You can also get Betty Crocker gluten-free cakes mixes now. There are lots of recipes in the recipe/cooking forum. I think it is better to wait on those kinds of things (baked goods) for a while though until he is adjusted to the diet.

While he is in the hospital they should check his vit D and Vit B levels and iron etc. Celiac causes malabsorption so we tend to be low on some vitamins. Some people get liquid B-12 to take at first. Remember to get gluten free vitamins and medicines also.

GottaSki Mentor

Healing prayers for your husband and prayers of strength for you.

He can heal. My system was a mess and was very seriously ill when diagnosed in March. At nine months I am feeling younger than I have in 20 years!

I hope you both have an easy transition to gluten-free. Sounds like you'll do well because of the frustration of going undiagnosed for so long. I know I went thru a period of great anger for all the lost years while doctors were dismissive of more mild versions of the same symptoms I was diagnosed with. All that time my health could have been restored by something in my control!

Good Luck to you both.

Ahorsesoul Enthusiast

Your dh has a hero with you by his side.

DianeBinNY Newbie

I have a question for the people writing about having swollen intestines. For about 5 months I have a part of my intestine that rises up out of my stomach, only when I lay down at night. I went to the dr thinking it was a hernia but they said it wouldn't come out when you lay down, it would fall back into place if it was a hernia. They sent me for a CAT scan and it came back that they could see it happening and that it may be due to no inner-abdominal fat. They told me to do sit-ups to make the muscles in that area stronger and maybe it wouldn't keep happening. I'm wondering now if it's a swollen intestine which I had never heard of before. It happens almost every night. It's about 3 inches long and rises up about an inch. It's really weird but doesn't hurt or anything. I went to the Celiac Disease Center in Manhattan and mentioned it there and they asked Dr. Green but he had never heard of it. Any ideas? Thanks.

Mtndog Collaborator

Keeping you both in my thoughts and prayers!

Ahorsesoul Enthusiast

New to this, How is you dh? And how are you holding up?

  • 4 weeks later...
New-To-This Rookie

New to this, How is you dh? And how are you holding up?

My Dear husband came home on December 16th late in the evening. He had an endoscopy that afternoon before being released home. As it was the holidays we have not heard anything yet. Friday I called and asked that someone look into the results and get back to us. My husband is doing much better and is not falling asleep at 4:30-5PM anymore, he is now making it to 7-7:30PM before he falls asleep in his chair. So we are seeing progress, lol. He is still dealing with fatigue, as is expected, but it is getting better.

I have been doing a lot of reading, and learning tons of stuff. One of things we found going to a small community hospital is we knew as much if not more in some areas than the hospital staff. Our doctor was not only willing to admit he knew nothing about celiac and would order a test, he was also willing to get on line and get information. Which prompted him to come back to my husbands room and tell him we can't do the blood tests because you need to be eating gluten in order for it to show. The doctor said because we where gluten free for a month before going in we would have to go back to gluten foods for the blood test, and he said "I wouldn't do it if it was me". We knew as much as the dietary staff which surprised her as she has family members with Celiac, otherwise we probally would have known more. We where the first case that the dietarian was aware of that was hospitalized in our community.

I had bought a turkey for Thanksgiving and it had wheat flour in the base, and even though we felt fine it propbally wasn't a good thing to eat! Why does Jennie O OR any other turkey processor put wheat flour in the bast????? We thought we where buying a turkey, what a shock! I had bought several and had to give them all away!

For Christmas I found a free ranged organic turkey and we had that, it was fabulous! So maybe I'll raise a few of them as well as my chickens this spring, lol!

We had originally planned to go to FL over Christmas, but stayed home as the DH was just home from the hospital and on the mend. We are planning to go in about 10 days, fortunately we RV so I can do all the cooking, instead of eating out. I made a list of things I need to replace in the RV as well, thank ggodness its still free in my mind or we could have a cross contamination problem because it was months later and had forgotten about having to replace things. I still need to get a cutting board for the RV and have a new toaster and new utensils to replace the old. I even went out and bought new toothbrushes, lol! Last thing I want is to be in the middle of no where, unsure of what state or county I'm in in the middle of the night and needing an ambulance, so caution, caution, caution is my motto for preparing the motorhome for this and future trips.

Overall he is doing a lot better, we had toast, eggs and bacon for breakfast Sunday morning and he had some issues so we are trying to figure out if it was the gluten free bread or the bacon, as we haven't had either for over a week. It is nice being able to ask yourself was it X or Y and not what was it, lol. So we are going to try having only bacon next Sunday as we hear that in the early stages of recovery sometimes even gluten free bread is not tolerated well. If we still have problems we'll try toast without bacon the following week. If there is still a porblem than we have elliminated both for now at least.

ravenwoodglass Mentor

Glad to hear that he is out of the hospital and doing better. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,981
    • Most Online (within 30 mins)
      7,748

    jennifergodshalk
    Newest Member
    jennifergodshalk
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It sounds like your gastroenterologist is becoming increasingly confident that celiac disease is the likely diagnosis based on both your older and newer lab results. Her suggestion to call each Monday for possible cancellations is actually a great strategy—especially given how long the wait is until your August 29th appointment. It’s also a good sign that she’s advocating for you to be seen sooner, which shows she’s taking your case seriously. The fact that some labs might not have been drawn yet due to overlap with your functional health doctor’s upcoming testing adds a layer of confusion, but that’s unfortunately common when multiple providers are involved. Hopefully, the GI’s remaining labs will still get processed, or she can reorder them if needed. As for the colonoscopy prep, it’s totally understandable that you're dreading it—many people rank it among the least pleasant medical experiences. You’re definitely not alone in preferring the pill prep option over the liquid kind, especially if you don’t drink Gatorade and had a rough experience with Miralax in the past. Hopefully, your doctor will approve the pill form, especially since you’ve tolerated other options poorly before. Fortunately, the upper endoscopy doesn’t require any bowel prep—just fasting, usually starting the night before—so that part should be easier to handle. It’s great that you’re already trying to boost your gluten intake, but yes, tracking gluten content can be surprisingly tricky. You’re right that the general rule for wheat-based products is to multiply the protein content by about 0.75 to estimate the gluten content. That means foods like oyster crackers, while convenient, may not pack enough gluten to help reach the recommended daily goal of around 10 grams before biopsy. It’s helpful that you caught that early, and switching to more gluten-dense foods like regular wheat bread, pasta, or wheat cereals might make it easier to hit your target. It’s not easy eating more gluten when you’re trying to manage symptoms or just not used to it, but doing so can make a big difference in ensuring your biopsies are accurate. You’re on the right track—hopefully with a little luck, you’ll get a cancellation and be seen sooner.
    • cristiana
      Thanks for sharing that film, @trents.  I am not sure how I missed that film as I see it is a few years old, but it is very good.  I think you should be fine if you take your own packed lunch and eat it from your own lunchbox etc.  Might be worth doing a lunchtime recce to see how cramped the room is before making a decision - for all you know, there may be other people  there who don't eat gluten?
    • cameo674
      The GI doc messaged me this afternoon that she believes that the new blood work added to the old is definitely  looking like a celiac diagnosis is in my future.  She wants to me to call into scheduling each Monday to see if I can get my August 29th appointment moved up due to cancellations.  I have never had a doctor recommend that.  She also said there were additional labs that she requested still out that have not come back yet; so, they may have been missed drawing those since the functional health doctor has a whole slew of labs that I am suppose to be waiting until August 27th to do. I am still waiting to hear on whether or not she will allow me to do pill prep versus the typical gatorade prep that I did 8 years ago for that colonoscopy.  I do not drink gatorade to begin with and that miralax prep kept me in the bathroom up until we drove to the procedure.  My younger brother said the pill form was fairly easy when the liquid form is hard to swallow. Colonoscopy prep is definitely close to number one on the list of things I never want to experience again if I could avoid it.  Number one is a different medication that caused severe cramping that had me in tears until it wore off.  Never having had an endoscopy, I have no idea of what that prep is like, but it cannot be worse right? I started munching on oyster crackers last night.  It is shocking how filling they are.  I just read that I need to pay attention to the protein content of the wheat bread product or I will miss the gluten goal of 10 g per day prior to testing.  The post said that I should look at the protein and multiple that number by .75 if it is a wheat flour product to see how much gluten is in it.  No more oyster crackers for me.  I would have to eat 10 oz bag everyday to meet my goal.  not going to happen.
    • Alibu
      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like proteins, veggies, fruits, and carbs like potatoes and rice.  However, the rest of the household will not be gluten-free, which is fine, I don't want them to for various reasons.  But I have SO much food in my house in the pantry and fridge and cabinets, and it feels like I need to get rid of a lot in order for me to start fresh, but at the same time, I can't get rid of everything. I guess it's just feeling overwhelming and I've never given up gluten before so this is going to be a huge shift for me and I feel like I need SPACE, but I can't quite have that. Any advice on just getting started and organizing myself would be great!  
    • Scott Adams
      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the diet, even partially, which might explain why your recent tTG IgA was now negative and your tTG IgG was borderline high. That’s likely why your GI mentioned it was “usually the reverse”—typically, tTG IgA is more commonly elevated in confirmed celiac, not IgG alone, especially when IgA levels are sufficient, as yours are. Your gene testing confirms that you carry HLA types (DQ2.2 most likely) that are permissive for celiac disease, meaning you can develop it, but not everyone with these genes will. These genes don’t explain why your symptoms are milder or different from others with celiac—many people have so-called "silent" or atypical presentations like yours, with issues like long-term heartburn, loose stools, nutrient intolerances, or just gradually adapting to symptoms over time. It’s not uncommon to assume these symptoms are just aging, medication side effects, or lifestyle-related until someone finally connects the dots. It’s a good thing your daughter advocated for you to be tested—many cases are missed for years because they don’t follow the “textbook” presentation. As for the immunoglobulin tests, your doctor likely ordered those to ensure your immune system is functioning normally, particularly your IgA level, since a deficiency can cause false-negative celiac blood tests. Since your IgA level is normal, your tTG IgA test should be reliable (assuming adequate gluten intake), but again, if you weren't eating enough gluten, that could explain the lower antibody levels now. The comprehensive metabolic panel and negative stool parasite results are additional pieces ruling out other causes of your symptoms, like infections or organ dysfunction. The upcoming endoscopy and colonoscopy should provide more definitive answers, especially with biopsies looking for celiac disease, eosinophilic esophagitis, and microscopic colitis. It’s completely valid to feel unsure about what you’re experiencing, especially when your symptoms have been lifelong or gradually worsening without being severe. You’re not alone—many adults with celiac or gluten-related disorders report subtle or chronic symptoms they’ve normalized. You’re doing the right thing by staying on gluten now through your procedure date in August. Try not to stress about reaching the full 6-slice equivalent each day, but do increase your gluten intake as much as tolerable (e.g., a couple of pieces of bread, pasta, crackers, etc.) to give the biopsy the best chance of detecting any damage. Good luck with your upcoming procedures—you’re closer than ever to answers and a clearer direction forward.
×
×
  • Create New...