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

Do I Really Need To Know What I Have?


one more mile

Recommended Posts

one more mile Contributor

HI all this is my first post. I am new to all this. Basically after having my thyroid removed (goiter) I have gained a lot of weight (20 pounds and I am 5 foot 2) and am always tired. I went off of gluten about three weeks ago ( and have lost 12 pounds and about 3 or 4 inches on my waist) I probably do not have celiac disease because I gained weight during all this. But am totally Gluten intolerant. After a week of no flour I tested it by having a lightly breaded fish. You could see the flesh of the fish though the breading. 20 minutes later I was screaming in pain.( lower abdomen and the areas before and after my joints)

My question is how important is it that I figure out which I am? I can not bare the thought of eating gluten and going through the pain, tiredness and foggy head, Just so I can get a blood test done. I will not consider a biopsy. I have been messed up enough over the years by doctors cutting me. Do I really need to know which one I have? Or can I get well enough just being Gluten free? Is there a difference in treatment?

Thanks all!

One more mile


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



Celiac.com Sponsor (A8-M):



Fiddle-Faddle Community Regular

It's a total myth that you have to be underweight to have celiac. Many of us here were overweight until we went off gluten.

If being gluten-free fixes all your health woes, then yes indeedy, you have found your answer and don't need another test!

Besides, I'm not the only one here who believes that for at least some of us, gluten intolerance is just early stage celiac disease.

Welcome aboard, and here's hoping that you are now on a road to good health!

GFinDC Veteran

Heck yeah, one more mile, maybe two! Welcome to the board. If it makes you sick don't eat it is pretty good advice. How important to know for sure you have celiac vs gluten intolerance is up to you. Testing will possibly confirm your disease but is not 100% accurate either. The difference might be that with celiac there is a proven relation to body damage from eating gluten, and that link may not be so strong or clear with gluten intolerance. Then again lots of things are not real clear with celiac symptoms either. There is still a lot the doctors are learning or trying to learn about it.

darlindeb25 Collaborator

I'm with Fiddle-Faddle.....I too believe that gluten intolerance is the early stages of celiac disease. I also believe that one day, the scientist's will finally realize this too. She is also correct in telling you that many celiac's gain weight before going gluten free. Many malnourished people gain instead of becoming a stick person.

I have not been diagnosed with celiac disease, I do however have double DQ1 genes. The day will come when DQ1 genes will be included in the gene pool of celiac disease, some doctors already think so.

When you read about diabetes, you read about pre-diabetics...not quite diabetic yet, but soon will be without a change in lifestyle. I think the same is true of celiac's and gluten. If you do not want to deal with anymore testing, then live the gluten free lifestyle. If you feel better, and you know it's the best thing for you, then go for it. Good luck!

Tim-n-VA Contributor

It is pretty clear that if you want to know what not to eat to feel better, you have all of the information you need. But, since you asked and because people lurk without asking, I'll give one view on why someone might want to know what they really have.

There are at least three subsystems of the body that can react to gluten. You can have an autoimmune reaction (celiac) where the body attacks itself in reaction to gluten. You can have a true allergic reaction where the body attacks the gluten with parts of the body receiving collateral damage. You can have true digestive system problem where you can't process the gluten. Other than this forum, the digestive issue is usually what is meant by a food intolerance as in lactose intolerance means the digestive system can't handle the lactose, not that the allergy or immune systems are reacting.

I disagree with "gluten intolerance is just early celiac" only because I have seen people use the phrase "gluten intolerance" in so many different ways to include as an umbrella term for "something bad happens when I have gluten".

Because of the way diseases occur in clusters, knowing which subsystem is reacting can offer clues for other problems. While this doesn't preclued getting those related things diagnosed and treated, generally more information is better. There are few symptoms that are unique to one underlying cause so having more information to make the differential diagnosis helps.

Of course, if you are already gluten free or having severe symptoms, consuming more gluten to get a definitive diagnosis is a lot to go thru to get only incremental information.

ShayFL Enthusiast

Getting an official dx is your decision. Some believe it is better NOT to get the dx so there re never any insurance issues later on in life. Yet, in Europe getting that dx is very important because their government pays for your gluten-free food. Wish we had that here......

Anyway. If you are the type who will "cheat" often because you always have that nagging doubt about whether or not you really have a problem with gluten, it might be beneficial to you.

If you KNOW your body treats gluten like poison and you DO NOT want more pain so you want always be "tempted", then you can choose not to have further testing.

The most IMPORTANT THING is for you to get better and stop damaging your body. You already figured that part out.

Lisa16 Collaborator

Having an official diagnosis will not change your day to day life at all-- it is the same in the end. You can't eat gluten either way. I think we are rightly all put together on this forum. We all the same problem to greater or lesser degrees and medicine does not understand us completely.

The only difference might be knowing that you run higher risks for autoimmune diseases and lymphoma. And even that is an iffy difference because they really don't know much about the risks for g-intolerant people. I have never seen a study. Maybe somebody out there has, but I don't think it is being done. There is so much they do not undestand in this arena. I have hopes with the recent news of the link between autism and gluten. Maybe people will start looking at it more closely.

It might be interesting to get the genetic testing done through Enterolab/ the Red Cross. But even the results of that will not really tell you either way. You can have the celiac genes without being celiac and you can be celiac without the genes. But it will show if you have any of the other known "gluten intolerant" genes. I suspect that anybody who carries these genes is at risk for developing the disease and I understand that if you have them, it is certain that you will be reacting to gluten in some form or another.

Once you are gluten free, the bloodwork is a bust and a positive intestinal biopsy is also unlikely. So unless you get DH that they can biopsy, you may never know. You will have to make your peace with that. And remember that in the long run it really doesn't matter.

With this illness, there is no call for anybody to be a "celiac snob" and nobody here will ever say... "oh, you are only gluten intolerant!"

Welcome to the club.


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



Celiac.com Sponsor (A8-M):



one more mile Contributor

Wow thanks you for all the fast response and good information. I am also a recovered alcoholic this is my 25th anniversary, And have had to figure out that that peanuts give me bad enough migraines that eating m and m's caused me so much pain that I had a 5 day migraine. So I have lots of experiance in staying away from poison that others around me enjoy. For the last Five years , maybe longer my mantra has been " I just want to be pain free and why the hell do I sleep so much?" My kid was morbidly obese and often ill until, she figured out that she can not eat meat or milk. ( if any on has info on people that can not eat meat please send it to me) and thinks white flour is crack.

I am sure I will be tempted but if I use the addiction model and think the bite though, I doubt I will be tempted to jump back into the world of pain. Once I went cold turkey then tested myself the results were just to dramatic to ignore. I am considering trying oats in a few weeks to see if I can eat them or not. but am scared so I may not. I can live without oats.

I am frustrated and angry( I am tired of being different from other people) Given the choice of a bag of pretzels or a romantic jump in the hay I probably would have chosen the pretzels a month ago. I have been angry this month since I no doubt was left in my mind that I can not eat Gluten but I have not been tempted. The pain and rock hard gut is just more then I can do to myself.

I am done having kids so I really have no need for testing. I may do the genetic thing later.

Thanks for letting me know that weight gain is possible with this. Everything I read said weight loss. If I would have known that I may have figured this out a year ago when I first looked in to it. But it gives me some peace to know it now. Maybe this really is my main problem.

I have a few more questions to post then I am off to pack for a camping trip. Thank you so much for your help!

one more mile

ShayFL Enthusiast

Congratulations on your recovery!! 25 years. Awesome. :)

Many get angry. But what I have learned is that I am not "different". My husband cant eat fish. My best friend cant eat chocolate without getting D. One friend has RA and cannot eat any nightshades or grains. Another friend cannot eat any starches. My husband's best friend is allergic to chicken and shellfish. One of my daughter's friends has a peanut allergy. My Mom cannot eat pineapples or mangos. My sister cannot eat lettuce or spinach. Almost everyone I know has some sort of allergy or sensitivity. Im just like everyone else.........

babysteps Contributor
I am considering trying oats in a few weeks to see if I can eat them or not. but am scared so I may not. I can live without oats.

Love your labyrinth picture!

When you try oats, start with one of the certified gluten-free choices (Bob's Red Mill is one, search this site for other brands). Read the package carefully, many brands have both 'certified' and nothing-special choices.

Some celiacs cannot tolerate any oats (Am I remembering someone citing a 3% figure?). Hopefully this isn't you :)

Many celiacs can't tolerate nothing-special processed oats, as there is a high risk of cross-contamination (cc) from 2 sources: the processing equipment, which is usually shared with wheat, and the field, where oats & wheat are often rotated from one growing season to the next, leaving a few volunteer wheat plants in with the oats.

The certified gluten-free oats are grown in fields that do not ever grow wheat, and processed separately (usually in dedicated wheat-free facilities). I know I couldn't tolerate "regular" oats but the gluten-free ones are fine!

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. - Clear2me replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Gluten free nuts

    2. - Mmoc replied to Mmoc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Blood tests low iGA 4 years later digestive issues

    3. - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Gluten free nuts

    4. - trents replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,388
    • Most Online (within 30 mins)
      7,748

    Whirlwind acres
    Newest Member
    Whirlwind acres
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Clear2me
      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
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      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
      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.
    • Scott Adams
      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
×
×
  • 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.