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

Is This Normal, And What Should I Do?


Guest hightop girl

Recommended Posts

Guest hightop girl

I was diagnosed in July, but I really didn't realize that gluten is EVERYWHERE. I was one of those people that actually gain when they eat gluten. I have been being really careful, and lost about 25 lbs. I am getting ready for a 1/2 ironman in June, and have suddenly gained 5 back. I am worried that I will start gaining out of control. I don't eat the gluten free cookies or bread. I have been really just following the elimination diet to figure out what else is causing my stomach pain and bloating. So I eat mostly fish, vegetables and fruit... I'll admit a few potato chips also cross my lips. Does this sound like a normal gain? What have you found that works?


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



Celiac.com Sponsor (A8-M):



HAK1031 Enthusiast

I wouldn't be worried unless the gain gets out of hand. It's likely even muscle gain from your training. The only suspect thing is the chips- only the lay's stax brands are really gluten-free, and many members have issues with other chips.

Guest hightop girl

This whole Gluten free thing is so difficult when you are just starting out. I will look for Lays Stax. I think what I have are ruffles plain chips they only list potatoes, sunflower oil, and salt. Am I missing something?

Jestgar Rising Star

some people think there are cc issues. I have a lot of reactions to food, but my gluten reactions are very specific. I have problems with potato chips, but they aren't gluten problems. So I don't really know what the problem with the chips is, but you might want to avoid them for a while, especially while you're training.

MDRB Explorer

A lot of people recently diagnosed with celiacs have problems dealing with fatty foods at least until their body heals itself. When I was diagnosed, I found it really confusing trying to understand the ingredients lists on foods. So I cut out all processed foods unless they were specifically labeled as gluten free. This might be a good option for you. It means more work preparing meals but it might make a difference. Also try checking things like the toothpaste, mouthwash, lipstick, even hand creams. Anything that comes anywhere near your hands or mouth could be ingested and cause symptoms.

Good Luck :)

Guest hightop girl

I found the Lays Stax and I have been ok with some brand of sweet potato chips. I definitely got into some gluten. I woke up this morning, after having a whole night of the runs and have gained 3 pounds. This weight thing is like adding insult to injury.

Kritter Rookie

I don't know how many of you might already be aware of this, but my Allergist told me that potatos (thusly, also potato chips) have a lot of naturally occuring msg. This isn't the msg that is added - but the kind that occurs naturally in things like peas, mushrooms, potatos, and espcially parmesan cheese. If you are sensitive to msg in other things - maybe that's what you are reacting to in the chips?

Kritter


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



Celiac.com Sponsor (A8-M):



Guest hightop girl

That actually makes a lot of sense because all of those things make me feel bloated and retain water. Hmmm... that is very helpful. Thanks a lot!

kitten37 Newbie

Is this the 1st event you have trained for?

Do you have a trainer working with you?

Chart your daily intake (absolutely everything that goes in your mouth) in a diary an outside eye may be able to spot a pattern or issue you are unaware of.

Have you gone up in muscle/fat ratio if you are training you may be building more muscle putting you up on the scale a bit.

How is your energy level while training consistent/getting more tired/getting better the more you train.

With the extra training have you upped your water intake to compensate for the extra water loss?

Also do you cater your diet to your training schedule? Eating certain things at certain times to help the process

Guest hightop girl
Is this the 1st event you have trained for?

Do you have a trainer working with you?

Chart your daily intake (absolutely everything that goes in your mouth) in a diary an outside eye may be able to spot a pattern or issue you are unaware of.

Have you gone up in muscle/fat ratio if you are training you may be building more muscle putting you up on the scale a bit.

How is your energy level while training consistent/getting more tired/getting better the more you train.

With the extra training have you upped your water intake to compensate for the extra water loss?

Also do you cater your diet to your training schedule? Eating certain things at certain times to help the process

I have trained for shorter triathlons, marathons and century bike rides in the past. I had to lay off for about a year because the celiac thing caused me to be so anemic. (I thought I was running, but people that saw me always asked if I needed help...LOL) I don't have a trainer, but I have been thinking about it. I just follow a plan I found online, with some adjustments for already running and biking a lot. The swimming part is what is completely new. I guess in reality, there are more numbers to look at than the one on the scale. At least that is what I would tell someone. I am back in slacks and jeans that I wore when I was 10 lbs smaller, but shirts and jackets are tight in the shoulders. That is probably weight gain from swimming and adding shoulder muscle. I am so obsessive that I hate to do a food diary, but I think I am going to have to. I think the "little snack" here and there are adding up to more calories than I think. My energy is actually good. I am always a little surprised. After being anemic for so long, it is amazing how a little oxygen in the blood (especially if you live at 7500 ft) will make you feel better. You have a good point about adjusting food intake with the output for the day or week. I just eat the same things pretty much everyday, so some days it is probably more than I need and others not enough. Thanks. I will give this some thought.

kitten37 Newbie

Also something to keep in mind swimming is hitting your whole body. So you may actually bulk a little bit before burning off excess.

Wish you all the best in balancing out. GL on the iron man...I wish I could do something like that but can only run on an eliptical after a sports injury years ago.

Ivanna44 Apprentice
I was diagnosed in July, but I really didn't realize that gluten is EVERYWHERE. I was one of those people that actually gain when they eat gluten. I have been being really careful, and lost about 25 lbs. I am getting ready for a 1/2 ironman in June, and have suddenly gained 5 back. I am worried that I will start gaining out of control. I don't eat the gluten free cookies or bread. I have been really just following the elimination diet to figure out what else is causing my stomach pain and bloating. So I eat mostly fish, vegetables and fruit... I'll admit a few potato chips also cross my lips. Does this sound like a normal gain? What have you found that works?

Hi hightop girl,

Yes, gluten is EVERYWHERE! as you put it. Congrats on losing the 25 lbs. I would not be worried about the 5 pounds gain, you have most likely gained it, due to intensive working out. As you mentioned you are getting ready for an "ironman" competition in June. Lean muscle mass weights more than fat. Let's face it, better to gain muscle than a "ring of fat" lol.

I would not be overly concerned about gaining muscle mass. You need to train quite hard to be able to have the endurance for such a race. Just keep in mind, as long as keep up some type of toning after the ironman is done, you should be fine. Extensive training gains lean muscle mass and low body fat ratios. But, if you suddenly stop working out your body, will still think it will "burn it off later in the day" :( And it will start to "store energy" to burn later. But, if its not burned off, it turns into "stored fat." Let's face it, none of us wants fat. LOL.

Good luck on the "ironman" competition

:)

Guest hightop girl
Hi hightop girl,

Yes, gluten is EVERYWHERE! as you put it. Congrats on losing the 25 lbs. I would not be worried about the 5 pounds gain, you have most likely gained it, due to intensive working out. As you mentioned you are getting ready for an "ironman" competition in June. Lean muscle mass weights more than fat. Let's face it, better to gain muscle than a "ring of fat" lol.

I would not be overly concerned about gaining muscle mass. You need to train quite hard to be able to have the endurance for such a race. Just keep in mind, as long as keep up some type of toning after the ironman is done, you should be fine. Extensive training gains lean muscle mass and low body fat ratios. But, if you suddenly stop working out your body, will still think it will "burn it off later in the day" :( And it will start to "store energy" to burn later. But, if its not burned off, it turns into "stored fat." Let's face it, none of us wants fat. LOL.

Good luck on the "ironman" competition

:)

Thanks for the words of encouragement. I am also a mom of 2 and 44 yrs. old. I am new to trying to be gluten free, and my family is not gluten free. Right now that means cooking 2 separate meals. They are very supportive these days. They are seeing the difference it is making in my health.

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. - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

    2. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      2

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,399
    • Most Online (within 30 mins)
      7,748

    Hoyt Marquis
    Newest Member
    Hoyt Marquis
    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

    • JoJo0611
      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • 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.        
×
×
  • 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.