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Age Of Diagnosis?

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Mrs. Smith Explorer
Mrs. Smith
Posted
Looking back I'd say my symptoms started when I was 15 after I had a severe case of mono. I was just diagnosed though back in October. I'm 25 and very thankful I got my diagnosis now. Some of the stories on here from people who waited a life time for a diagnosis are bad enough to make me cry!

Diagnosed after a BAD episode at age 28. I think mine also started in teen years. I had terrible D after eating cream of wheat. Infertility and miscarraige were some signs and always gastro symptoms. In March of 2008 I started having muscle pain and tingling. All are improving 3mos gluten free. My Dad also has Diverticulitus and IBS. I wish he would get tested for Celiac, too.

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Wenmin Enthusiast
Wenmin
Posted

Diagnosed at 41. Although I've suffered for the last 6-7 years. GI doctor could not find anything and kept telling me I had Acid Reflux. I was in for my annual OBGYN visit and was telling my doctor some of the symptoms I had. He suggested I go home and look up Sprue Disease on the web. The more I read the more I could see myself. Did some intensive research on the net for about 3-4 days. Then went to see a nutritionists. She recommended that I see a GI doctor in another larger city that specializes in Celiac.

I have never been back to my GI doctor. But, I have gone back to thank my OBGYN! HE WAS THRILLED!!!

princesskill Rookie
princesskill
Posted

i was diagnosed over the last year between 25 and 26 years old. it was sort of by fluke, i have polycystic ovarian syndrome, and my reproductive endocrinologist saw that i was severly deficient in several vitamins and was anemic, between her and my GP we figured it out and tests confirmed.

ranger Enthusiast
ranger
Posted

I was 62 when self-diagnosed with celiac. Had been sick for nearly 2 years. Constant D., wieght loss, extreme lack of energy, many symptoms. I found this sight and tried gluten-free diet and felt much better. Went to Doc who took blood test (only 1 ) that showed up neg. for celiac. Of course I knew it would, because I had been on the gluten-free diet. Took the huge leap of making an appt. with Gastro guy. Went on gluten challenge for 3 weeks ( I was instructed to eat 1 piece of bread a day) for endo. Took 1 biopsy and declared neg. for celiac.. Of course, by this time, I was sick as a dog! And then I found out that he had used the blood test from the first Doc.! Went back on gluten-free diet, have gained 11 lbs., and can finally get awy from the bathroom! Growing up, I don't recall any health issues, and I was a healthy wheat-eating adult untill this. I did have a problem with panic attacks (controlled)and consantly cracked fingers, but dismissed those. By the way, my ears itched consantly! Wierd. But, I feel so much better now. Just started B-12 4 days ago, and can feel the difference. I don't like Doc.

ranger Enthusiast
ranger
Posted

Forgot to mention. Sister dx with celiac at age 12. Mother dx with chrons, but I think she was probably celiac. If they can't get it now, they probably goofed in the 70's.

ranger Enthusiast
ranger
Posted

Forgot to mention. Sister dx with celiac at age 12. Mother dx with chrons, but I think she was probably celiac. If they can't get it now, they probably goofed in the 70's.

Lollie Enthusiast
Lollie
Posted

I was 32ish....

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cyberprof Enthusiast
cyberprof
Posted

Age 48

I believe that I had first symptoms at 17. Started getting arthritis pain, and was tentatively diagnosed with Rheumatoid Arthritis. Had terrible stomach cramps (writhing on the floor) two-three times a week, mainly after eating big meals-- I thought it was stress or eating too much.

Other symptoms were frequent big D, depression, arthritis, anxiety, frequent mouth sores, early(quick) menopause.

~Laura

Glutenfreegirly Newbie
Glutenfreegirly
Posted

Hello my name is Rachel and I was 13 when I found out I had Celiac. I am a freshman and I have proudly been eating gluten free for two years. :rolleyes:

emcmaster Collaborator
emcmaster
Posted

21.

I had been sick for 2-1/2 years before that.

I feel fortunate that I wasn't sick for that long before I went gluten-free. Could have been a lot worse.

puggirl Apprentice
puggirl
Posted

I was 27, in Aug, 08 is when I was diagnosed.. I've been gluten-free ever since... Except for acouple accidentel Glutens... But have gotten through it...

I've had Bad stomach problems since I can remember, young like 5-6yrs old.. I used to be a very nervous kid so I always had belly aches. I finally got FED-UP with the stomach pains I went to the doc and we figured this was my problem, and it seems to help for sure.. Every once in awhile I still get sick and have bad nights, but for the most part I've been better, I will find out more when I get a colonoscopy in a few weeks "Yeah Cant wait :rolleyes: "

mattathayde Apprentice
mattathayde
Posted

found out at 18 april 08(just a couple months before my 19th), i have had symptoms for years, probably all my life just never realized it. took a few months before i was trying to be 100% gluten-free but i did eat pretty gluten light and started to see some improvement, been trying to go 100% gluten-free since july of 08 (last gluten thing i can honestly remember eating know it had it was on july 4th my brothers girlfriend (who past away in aug from an aneurism) brought awesome cup cakes, looking back was well worth it).

i have been accidently glutening my self for a while though, stupid kellogs cornflake crubms i was using in a meatloaf recipe made with malt.

my mother had a wheat allergy when she was young and my dad has a sensitivity to wheat/gluten but neither have been check in any way for celiac disease yet.

only way i found out was an alternative medicine person we go to, my old doc said i had IBS and my current doc said theres no reason to do a test if gluten-free works for me the only thing the tests will do is tell us what we already know, raise insurance rates, and make me suffer a month of gluten

-matt

lenjac Newbie
lenjac
Posted

I was 33 and kept complaining of reflux issues that the GI doctor would not agree with. Finally family practioner order the celiac blood panel. Felt soooo much better w/in 2 weeks! Have been gluten free for over 4 years.

To all the newbies, it gets easier as you go. But every accidental glutening seems harder to handle.

calgaryjill Newbie
calgaryjill
Posted

Diagnosed in Nov 2002 at 48 but have never had gastric symptoms. Anemia was the red flag that got my Dr interested. Iron levels had been very low for many years even though I was peppy and had no troubles keeping up with the kids. I could pump the iron levels up with iron supplements but not sustain it. Even after being gluten-free for a year though my irons levels didn't recover and it was put down to my menstrual flow. Now that I'm done with that, iron levels are fine. Because I don't ever have a gastric reaction to gluten I sometimes sneak a taste of forbidden foods and don't worry too much when we travel although I do try to avoid gluten whenever and wherever I can. I know I'm tempting serious consequences but am willing to take that risk.

frecOregon Newbie
frecOregon
Posted

I was 46, but I'd had dangerously unpredictable digestion since college. One doctor told me I had irritable bowel--I said, "Isn't that just a medical term for we don't know what's wrong with you?" I gave up milk and that helped. I started eating bananas, rice, and eggs before any major event as they were the only foods that I knew didn't make me sick. A new young doctor referred me for a test when my reflux got so bad that I lost my voice for several months.

CMG Rookie
CMG
Posted

I was 43. First figured out that I did better on low-carb diet back when I was 30. At that point I had had many symptoms for 10 - 15 years. So, somewhere around 25 years of symptoms before figuring out that gluten is the culprit - including migraines, brain fog, vertigo, neuropathy, rheumatoid arthritis, possible sjorgrens syndrome, reflux and all the other digestive symptoms, and the list goes on.

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    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
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