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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,913
    • Most Online (within 30 mins)
      7,748

    patanddiane
    Newest Member
    patanddiane
    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

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.