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

Year And A Half And Still Not Better.

mcole

By mcole
in Coping with Celiac Disease

Recommended Posts

mcole Newbie
mcole
Posted

I was diagnosed with Celiac in November 2007 (the day before Thanksgiving). I felt so much better for about four months and then slowly but surely ALL my symptoms came back (bloating, stomach pain, tired, headaches, joint pain). The doctor that found the Celiac basically told me to go online and then in the next breath told me there are a bunch of "wackos" online. My insurance would never pay for a nutritionist.

I'm seeing a new doctor now who is in the middle of performing all the same test I had in 2007. I'm very frustrated as the doctor is telling me one thing while the books and internet are telling me another.

I'm hearing some people say that they cut out all foods except veggies, fruit, and meat for awhile. Do all people need to do that? Any advice as I'm starting back at square one? I feel like I've been doing without for a year and a half for nothing.

I'm willing to try anything as I'm so bloated I look 5 months pregnant and it's painful!

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

Celiac.com Sponsor (A8-M):


wild fisher Rookie
wild fisher
Posted

If you've been eating gluten-free and your Dr runs celiac panels he won't find anything. You need to eat gluten for roughly two months to get it back in your system so the tests can come back positive. At least that's what a Dr told me. Anyway, I learned from this forum that it could be soy. I've stopped all soy consumption and for the past 4 day's i feel better. My stomach isn't bloated like normal.

dilettantesteph Collaborator
dilettantesteph
Posted

I was diagnosed at about the same time as you. I too, felt much better immediately. I have found that as time goes on I have gotten more sensitive to smaller amounts of gluten. As my symptoms came back I had to eliminate more and more foods. Now I am one of those super sensitives and I go to crazy extremes not to get sick. At this point I have had to cut out almost all commercially available products, and have to cook almost everything from scratch. I never go out to eat anymore, and we have a gluten free household. I hope you don't have to be as crazy as I, but maybe you need to examine you diet and toiletries more closely. It is fairly easy to avoid items made in shared facilities, for instance. When I do get accidentally glutened all those symptoms come back hard. It happened recently and I couldn't even fit any of my pants. These are pants that I wore before I was diagnosed.

The simple diet plan is a good one. Then you can add foods one a week until you know what you can eat and what you can't. I hope you feel better soon.

mamaw Community Regular
mamaw
Posted

If I'm reading your post correctly , you were told in 07 you had celiac???? Now you are being retested because you are not feeling better? If you have been gluten-free for all this time & are now being tested your results will not be accurate or correct...

Have you checked out allergies to other foods ie: nightshade vegetables, corn, soy, MSG, Food colorings,dairy,sugar. Many of us are sensitive to many other foods...not uncommon at all.

I agree that many doctors don't understand or even care it is just easier for them to tell you that it may be nerves, emotional issues & so on....And give you a pill.....

You must take your own well-being into your own hands & find what works for you..That may be an elimination diet for a while...

Some fell better with adding vitamins & mineral, enzymes & probiotics ..... Another thing to think about is you can have the big D & still be constipated.... again common.

Don't get discouraged , keep plugging along until you get to where you feel good. Many of us have been right where you are. Sorry to say there are no quick fixes or cures but you too will reach your goal. But again you need to take matters into your own hands. I probably would be dead by now if I believed what several doctors told me what they said my dx's was... I have doctors scratching their heads becuase they dx'd me with ALS.. I went gluten-free years ago & have been talking & walking ever since! There is hope & answers but again you may have to do it alone!!!

blessings

mamaw

mcole Newbie
mcole
Posted
  • Author

Thank you for the kind words of encouragement. I think I'm going to start with the basics and then add things in slowly. How long would you say to cut out processed foods before I start adding back in a testing? When I feel better?

mamaw Community Regular
mamaw
Posted

Hi

I can only tell you what I have done in the past. I did week intervals, adding one new item each week. I started out very plain & bland. Homemade broths with a few veggies in it for a couple of days, I then added plain chicken grilled with salt & pepper & a bit of spice( your choice)I ate this for a week. I did add some rice mid week. I drank 60 ounces of water throughout the day, pure distilled water. I also drank a good green tea & one coffee a day...I stayed away from all dairy , soy, corn, nightshade vegetables. until the last & final things I wanted to add in... I did have problems with nightshade veggies. Potatoes for sure.... I know many are not into alternative modes of healing but since I'm so sensitive to tons of things on planet earth I find alternative works for me with far less side effects. I used NAET & also Bio-set at differnet times. You can google both. I now eat nightshade veggies, vit C with no problems. I still get seasonal allergies but that is about all since I used these treatments. I plan on doing another treatment for the seasonal allergies soon. Insurance will not usually pay for alternative treatment so I must be choosy about what I do these days...

If on days when I felt very starved I would eat fruit & carrot sticks, celery.....

There are other ways to check to see if you are not tolerating anything by closing your eyes & place the item over your chest for a few minutes. If your body sways backwards you probably are sensitive to that item. I know this sounds like witchcraft & to many it is quackery but I for one honestly know it works. Our vet actually saved our pets life by doing this!

My hubby also had high cholestral& mainstream doc wanted to put him on drugs that can cause liver damage & kidney failure. I said NO WAY .. I asked the doc for four months to try on our own. Well, four months & his numbers are way down..The doc even called to ask how I managed to do this is just four months. He was shocked that this remedy I used worked. I think he is now telling his patients about this.... no side effects either.

blessings

mamaw

wschmucks Contributor
wschmucks
Posted

SO frustrating. I havent been diagnosed that long, but feel like i havent progressed either. Have you tried the SCDiet? Alot of people have had luck with it, it sounds really hard, but when its for your health it is easy and worth it. I have C and have been on the diet only 6 weeks and have noticed changes, but am not better. The only reason i agreed to do the diet is because it is a ful-proof way of being gluten-free so you know you have NOT been glutened ever. You simply cannot trust packaged food. I also felt it was the only way i could say i really did EVERYTHING i could, i didnt want another year to go by and still feel sick and not have done everything to make myself better.

Good luck.

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

Celiac.com Sponsor (A8-M):


wendstress Rookie
wendstress
Posted

My initial thought is that you could also have something else going on???

I found the celiac disease in 12/08, and then had an EGD/Colonoscopy in March to confirm that nothing else was happening. Turns out i also have microcolitis, or specifically, lymphocytic colitis.

The treatment for celiac disease is pretty clear - Gluten free.

The treatment for the colitis is not as clear - gluten free for sure, caffeine? raw veggies? soy? There are lots of irritants that can cause the colitis to flare up and they are different for everyone. I have no idea what I am personally dealing with, yet.

The forum is helping me to learn about the colitis side of things: Open Original Shared Link

It may be worth a visit to that site - even if you don't have colitis they have a lot of good experience narrowing down the food intolerances.

Good lucK!

dilettantesteph Collaborator
dilettantesteph
Posted
Thank you for the kind words of encouragement. I think I'm going to start with the basics and then add things in slowly. How long would you say to cut out processed foods before I start adding back in a testing? When I feel better?

Yes. Good Luck.

Archived

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

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


  • Member Statistics

    • Total Members
      128,203
    • Most Online (within 30 mins)
      7,748
    Barbara 1981
    Newest Member
    Barbara 1981
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Endoscopy

      By Scott Adams · Posted

      Given your history of a high TTG (167) that decreased to 16 on a gluten-free diet, along with genetic confirmation of celiac disease, it’s likely the negative biopsy is a false negative due to not eating gluten before the endoscopy. Gluten is necessary to trigger the intestinal damage seen in celiac disease, and avoiding it can lead to healing and a normal biopsy despite ongoing immune activity (reflected in your still-elevated TTG). The inflammation observed during the endoscopy (“diffuse moderately erythematous mucosa”) could be residual damage, mild ongoing inflammation, or another condition like peptic duodenitis, but it’s consistent with celiac disease in context. Continued positive blood markers suggest ongoing gluten exposure, possibly from cross-contamination or hidden sources. Strict adherence to a gluten-free diet and follow-up testing are key to managing symptoms and reducing inflammation. Discuss these findings with your doctor to confirm the diagnosis and refine your dietary approach. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Biopsy results after 1,5 gfd

      By Scott Adams · Posted

      Yes, it sounds like great progress, but what was the time frame between the two endoscopies? 
    • Scott Adams
      Help with results

      By Scott Adams · Posted

      Your symptoms—headaches, dizziness, nausea, irregular bowel movements, anemia, and menstrual changes—along with a family history of celiac disease, strongly suggest celiac disease could be the cause. The mild duodenal changes seen in your biopsy are consistent with early or mild celiac disease, though they could also be due to other factors. The improvement in bowel movements after cutting out gluten is a positive sign, but other symptoms like headaches and dizziness may take longer to resolve as your body heals. It’s important to continue a strict gluten-free diet and discuss further testing, such as celiac antibody blood tests or a follow-up biopsy, with your doctor to confirm the diagnosis. Many people experience a gradual improvement in symptoms over weeks to months, so patience and strict adherence to the diet are key. You’re not alone in this process, and support from celiac communities can be very helpful. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By Scott Adams · Posted

      For people with celiac disease and corn intolerance, most salts, including table salt with dextrose, are generally safe in small amounts, as the dextrose is typically highly processed and unlikely to contain problematic corn proteins. However, if you’re highly sensitive, you might consider switching to pure kosher or Himalayan salt, which don’t contain additives. While bringing your own salt to restaurants or avoiding seasoned foods can feel overwhelming, it’s a practical step if you’re concerned. Many people with corn intolerance tolerate trace amounts of dextrose in salt without issues, but individual sensitivity varies. If your current salt isn’t causing symptoms, it’s likely fine to continue using it, especially given your financial constraints and the challenges of managing dietary restrictions. Focus on what works for you and prioritize avoiding larger sources of corn, like cornstarch.
    • Scott Adams
      Stomach pains etc 2 weeks after start of gluten-free diet

      By Scott Adams · Posted

      Your daughter’s ongoing stomach pains two weeks into a gluten-free diet could be due to her body still healing after months of gluten exposure, as recovery from celiac disease can take time. Her inconsistent eating habits and possible eating disorder behaviors may also delay healing. While she’s now eating gluten-free snacks, her limited intake and emotional withdrawal complicate the process. It’s positive that she’s trying, but recovery may take weeks to months. Addressing her depression and mental health is crucial, as celiac disease can impact mood, and proper nutrition may help. Patience and support are key, but if symptoms persist, consult her doctor to rule out accidental gluten exposure or other issues. 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.  
×
×
  • Create New...