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

Went Gluten-Free - I Feel So Much Better.


TheIntern

Recommended Posts

TheIntern Newbie

So, here's the story. I've been just sickly for about 8 months now. I thought it was everything from a very hardy cold to fibromyalgia. My boyfriend thinks I'm a hypochondriac, but I KNOW there is something wrong with me. I don't have the option of going to any kind of specialist (no insurance) so the best I can do is my school's health clinic. They are quacks. Seriously - they would hardly even listen to me. They said it was indigestion, menstrual cramps, the flu...you name it. Anyway, here are a list of my symptoms:

- frequent diarrhea (super smelly & floaty - sorry about the graphic description)

- night blindness (I'm not sure if that's relevant or not)

- super thin, brittle nails

- bouts of skin problems

- just a sick feeling most of the time

- light-headedness

- body pain - I don't really know exactly how to describe it...just pain. Different places, different times.

- headaches

- EXTREME fatigue

- irritability

- sad for no reason

- nausea & vomiting

- irregular periods (missed 4 months last summer - obviously not pregnant)

Like I said, this has been going on for about 8 months. I've also lost almost 30 pounds - I'm 5'2". I was 145, now I am about 115 (not complaining there haha). I eat very healthy - whole wheat bread, fruits, veggies and protein. Lately, though, I've been paying more attention to when I feel the most sick. I've realized that my "sick" feeling starts about 30 minutes after I eat. I was experimenting with eating, and I found that if I ate carrots or grapes or a salad, I felt fine. But after eating a sandwich (with whole wheat bread), I just feel disgustingly ill - almost like I have the flu.

I was googling symptoms (bad idea, I know) and I came across gluten intolerance. I don't have money to go to a doctor, but I decided to just cut out gluten about a week ago. I feel SO much better. I still feel a little weird in the morning and my bowels aren't all the way better, but does this mean I am gluten intolerant? Should I stay gluten-free? What are your suggestions? Thank you so much for all your help in advance!


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



Celiac.com Sponsor (A8-M):



bartfull Rising Star

It sure sounds to me that you either have celiac or gluten intolerance. It will take a while for you to heal and start really feeling better. Some of us see results right away only to have setbacks a few weeks in. Some of us develop other intolerances to things like dairy, corn, soy, and other things.

You also have to be very careful about cross contamination. And you need a new toaster, and some new cookware if yours is scratched or cast iron. And you have to be careful about kissing your boyfriend if he has been eating gluten foods. Seriously.

There is a sticky at the top of the forum called, "Newbie 101". Read that, read as much as you can here in other threads, ask as many questions as you can, and by the way, welcome to the best forum on the web!

rosetapper23 Explorer

I agree that you probably have celiac...or maybe gluten sensitivity. The fact that you have night blindness, which is considered very rare, indicates--to me, anyway--that you probably have celiac. Night blindness can result from malabsorption of Vitamin A, and I've had it since the age of 11. Unfortunately, I didn't put the pieces of the puzzle together until I was 47, so I didn't know that celiac had been with me for my entire life. But, heck, there was no internet to go to! Anyway, my night blindness did not go away after going gluten free, but perhaps yours will, since you're still quite young.

Bartfull is correct about the cross-contamination. If you, in fact, have celiac, you'll need to be VERY vigilant about avoiding even the smallest amount of gluten. With celiac, a molecule of gluten can be just as damaging as a slice of bread. Over time, your symptoms should resolve, but the diarrhea may turn to soft stools and then finally firmer stools after 6-18 months. It takes a while for the gut to heal, so you must be patient. However, your gut pain and overall pain should resolve soon.

Because of your symptoms, it might be a good idea to take a multi-vitamin (one without gluten) with iron. In the best of all worlds, you should be tested for nutritional deficiencies, especially iron, B-12, folic acid, and D. Also, your thyroid should be tested, since celiacs tend to have thyroid problems, and a number of symptoms are also indicative of a thyroid condition. Would your college clinic be able to order such testing? It's really very routine.

I'm glad that you were able to figure out for yourself what doctors could not (join the huge club here at celiac.com in that regard!). You should enjoy a long, healthy life as a result of your perseverance. Welcome to the Forum! And please let us know if you continue to do well or have any additional questions.

TheIntern Newbie

Thanks for replying so quickly :) Just knowing that someone else agrees that gluten might be my problem makes me feel so much better - everyone else, my boyfriend included, thinks I'm psycho! Are there any vitamins I should be taking or anything? I've already taken steps to lower cross contamination, but I didn't even think about my pans and my toaster. Also, I'm very busy because I have 3 jobs, but should I stay away from restaurants? I love Dunkin, but lately even their coffee makes me sick. Could that be cross contamination? Thanks for all your help! I'm so glad to have support.

rosetapper23 Explorer

Would just like to add that I looked into the symptoms of Vitamin A deficiency and saw a bunch of your symptoms there. I've always had difficulty absorbing Vitamin A, but at a recent celiac conference, a speaker mentioned that both Vitamin D and A nutritional deficiencies in people with celiac can be relieved by taking Natural Vitamin D3 by Country Life (600 IU of Vit. A and 400 IU of Vit. D3). It contains medium chain triglycerides to help celiacs absorb these vitamins. You see, Vitamin A and D should be taken together in a particular ratio, and this supplement does that. I highly recommend it, as I now finally seem able to absorb both Vitamin A and D as a result of taking it--first time in my ilfe. Low Vitamin A can cause weight loss, skin problems, fatigue, and night blindness among other symptoms. I think you're a strong candidate for adding this inexpensive product to your daily regimen.

kittty Contributor

Celiac sufferers are often labeled hypochondriacs because of the variety of symptoms that pop up, and the lack of specificity about why we don't feel well. I heard it from doctors for years, but it hurts when it comes from a loved one :(

There are lots of articles in the Publications and Publicity section of the forum that you might want to pass on to your boyfriend. Maybe when he finds out that celiacs is actually pretty common he'll be more supportive.

I also had night blindness, and blurry vision, but they went away after about 2-3 months of being gluten free.

Be diligent with your diet, and like Bartfull said you may have setbacks at times. I didn't have the celiac tests done before going gluten free either, and during those first few months I would question the point of being gluten free because there were still days, and sometimes weeks, where I felt awful. But they do pass, and it's worth sticking to the diet, even without medical confirmation of a diagnosis.

Persei V. Enthusiast

Yeah, like everyone else, I think you do have something with gluten. And like everyone else, I want to remind about the set backs. I just got out of one, and it sucks because everything makes you sick, but, hey, sticking to gluten-free makes it better.

Onward, my friend!


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



Celiac.com Sponsor (A8-M):



TheIntern Newbie

Thanks for all your help, guys! I'm gonna go memorize Newbie 101 haha :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • 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. 
×
×
  • 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.