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

60 Years Old And Self-diagnosed


Discovery

Recommended Posts

Discovery Rookie

I keep searching the Web for someone like me.....I have changed my diet after MUCH research on the Web and TOO many doctors to count....no one with any type of diagnosis that helped....just kept throwing anti-depressants at me and a weak diagnosis of CFIDS. So long story short, I started a gluten-free diet about 3 weeks ago and although in some regards feel better, still lots of exhaustion, feverish, and stomach pain, but no major symptoms like before, i.e., stomach bloating, foul gas, diarrhea, etc. My question is this, HOW LONG till this stage passes? Is there anyone out there like me who believes or knows they found out in the latter stages? I know I have suffered for years and that my father definitely suffered exactly as I do. He eventually died of colon cancer. My fear is that I am too far gone to recover. Are there things I can do to help the healing process? I am skin and bones.

thank you. help. :0


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

You are not too far gone unless you're six feet under! :P

Welcome,

I don't know what CFIDS is, could you fill me in?

The gluten free diet take a while to master as it can be quite complex. It also will take some time to heal, providing that gluten is your issue.

Can you expand on your symptoms and your current meds?

nutralady2001 Newbie

Yes me! I have just turned 60, read my signature line for my 47 years of mis-diagnosis...................and I am a confirmed Coeliac as of last September via endoscopy and positive antibodies

I am beginning to feel wonderful! I have been ruthless and cut out even glucose syrup from wheat (deemed "safe " by Coeliac Australia............2 parts per million gluten there fore "no detectable gluten") and any skin care/bath/cosmetics products containing gluten

gfpaperdoll Rookie

welcome, I am 61 & have been gluten-free for 3 1/2 years. I tested thru enterolab.com. I have two DQ1 genes, as do most of the people in my family.

It takes awhile to heal, you will I am sure make adjustments to your diet as you learn more about food. I might suggest that you also go dairy & soy free at the same time. I always say this, but it is true that it does help you heal faster, especially at our ages.

Keep reading books & learning, check into lectins read "Eat right for your blood type", read "Dangerous Grains" and the newest fave book of mine is "Good Calories Bad Calories"...

learn about the nightshade foods, many of us do not tolerate potatoes.

I gave up corn syrup two years ago, best thing I ever did for my health, upped my meat consumption & I am mostly grain free - but you will find what works best for you, just be aware that it is a journey & things will change. Keep an open mind - wow I guess that is preaching to the choir, since at your age you figured this out on your own, some people cannot do that... well a lot of people it seems, & it seems that a lot of the younger ones do not believe that the unmm, junk is the mildest adjective that I can use to describe the food that they eat, could be harming them.

I think you will be feeling much better soon.

ravenwoodglass Mentor

I was cllose to death by the time I was diagnosed, if I can heal so can you. It does take a while and it does take ferreting out all possible gluten sources but you can recover. I have not come back 100% neurologically but otherwise after almost 6 years on the diet I am pretty much better than I had been since childhood.

The thing that helped me heal the fastest was going with naturally gluten free, non or minimally processed foods. I also added a sublingual B12 vitamin to help with my neuro issues.

Be sure to read as much as you can here. Be a fanatic about gluten at least at first until you know how sensitive you are. There are some things like grain derived alcohols and vinagers that some will tolerate but others won't so wait to test those until you have been gluten free for a while and then you will be able to tell if they are safe for you also.

Welcome, you have found a great resource. Ask any question you need to, no matter how silly or gross it may seem.

hathor Contributor

It does take time. Unfortunately, there are no definite timetables. It depends on the individual. I haven't heard anyone who has healed completely in three weeks, though, so hang in there. (Maybe the folks who heal in three weeks don't hang out on this board :D )

I assume you have a good list of ingredients that are safe, unsafe or need to be investigated further? And you know about how to avoid cross-contamination at home?

Dairy and soy seem to be problems for many. If your progress seems to stop, try eliminating them. Dairy seems to be the most common, second intolerance on this board. If you don't want to make any changes in your diet yet, you might start up a food/symptom diary and see if you feel worse after eating particular foods. Unfortunately, people may react to any number of other foods; there is no one size fits all.

A good multivitamin/mineral supplement would be useful. If you have malabsorption issues, you aren't getting enough nutrients out of what you are eating, and won't until you heal. I've read that magnesium is a particular need among those new to the diet.

I also recommend a good probiotic to help your gut develop a healthy set of bacteria.

Some people go through withdrawal from gluten, also. It may be that your symptoms are simply that and will fade on their own.

dbmamaz Explorer

Just wanted to add my experience. My symptoms were not that strong, but i did a journal entry about 3 weeks in to it, i posted a journal entry saying my digestion was much better, but i was hoping it would help my mood and energy level. A month after that, I posted saying my mood and energy were better too. I did have to get more careful about the gluten (no malt flavoring in cereal, for example). I've seen people say that an accidental glutening can leave them anxious and depressed for up to 2 weeks, too, and I am still feeling bad after a glutening last weekend. So you can definitely expect 2 steps forward and 1 step back.

good luck


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



Celiac.com Sponsor (A8-M):



Eric-C Enthusiast

As I cut gluten from my diet before going completely free a few weeks ago what I found was I went back through problems I had in the past.

6-7 years ago I might have had an issue that went away and was replaced by something else, thinking I had solved that previous problem in reality I had just replaced it with something else.

As I cut down I went backwards through that...my current issues went away and old ones cropped up. I personally saw this as progress since issues within your body are about balance. I was getting more in balance and it just took time.

I used to get very bad rashes on the inside of my thights and ankles...I attributed them a few weeks ago to gluten after doing some reading. Suprisingly they went away the past 2 years...as my gluten intake went down, they came back...now they are gone completely.

So I reached a certain chemical balance to make a certain reaction happen. You'll probably see similar things, you went all the way up the ladder now you need to come back down it but that doesn't neccessarily mean your not getting better.

dbmamaz Explorer
As I cut gluten from my diet before going completely free a few weeks ago what I found was I went back through problems I had in the past.. . .I used to get very bad rashes on the inside of my thights and ankles...I attributed them a few weeks ago to gluten after doing some reading. Suprisingly they went away the past 2 years...as my gluten intake went down, they came back...now they are gone completely.

Oh, I'm so glad you posted that! I was really baffled, because a weird bump showed up on my nipple, and i'd been plagued by these when i nursing 2 years ago but hadnt seemed them since, and was just kinda nervous to see it coming back, and then a rash between my breasts which hadnt bothered me in years, at least not in the winter, showed up . ..so this could be part of my progress? I hadnt even thought to connect them!

Blitz Newbie
I don't know what CFIDS is, could you fill me in?

Since nobody else answered this particular inquiry, I guess I will.... :D

CFIDS = Chronic Fatigue Immune Deficiency Syndrome (aka: Chronic Fatigue Syndrome)

Cheers!

-Geoff.

pixiegirl Enthusiast

I too was initially diagnosed with Chronic Fatigue Syndrome... it seems like a lot of us are... I'm curious if it is a complete misdiagnosis or do a lot of people with Celiac also have CFIDS?

Susan

SqueakLAG Newbie

I also am self-diagnosed after a negative test, but I have in just two (2) weeks been almost completely bloat free. I was so bad that they would ask me when I was due. I hope that the gluten free diet will be the answer for me after going on three years of "we don't know". I only had one doctor (an anesthesiologist in the family) who mentioned Celiac sprue, but I didn't have clue what that was. Actually, I still am not exactly sure. What is this test you can order?

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748

    DenisC
    Newest Member
    DenisC
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.