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I Just Started gluten-free Diet - Is It Normal To Have...


Mabc

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Mabc Apprentice

Hi, I just joined this forum. I was hoping someone could answer a question for me. I've just begun the gluten-free diet 4 days ago and some of my symptoms like weakness and fatigue have gotten worse. Is this to be expected? I suppose it could be due to other foods that I possibly unknowingly can't tolerate that I have now increased to fill the void. But I just wanted some comfort to know that this is to be expected.

BTW is all ketchups okay or not? I'm a little confused. Thanks for any info.

Mabc


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Guest schmenge

I don't know if I would say "expected" but I would say "not unusual." Everybody recovers differently. You may also find that some foods that did not bother you may now do so (lactose is common). Not sure about all ketchups. Most are, but you should always read lables.

ravenwoodglass Mentor
Hi, I just joined this forum. I was hoping someone could answer a question for me. I've just begun the gluten-free diet 4 days ago and some of my symptoms like weakness and fatigue have gotten worse. Is this to be expected? I suppose it could be due to other foods that I possibly unknowingly can't tolerate that I have now increased to fill the void. But I just wanted some comfort to know that this is to be expected.

BTW is all ketchups okay or not? I'm a little confused. Thanks for any info.

Mabc

It can take a while to feel better. I know it can be hard but things should improve. You may want to take a sublingual B12 in addition to a regular gluten free vitamin to help with the energy. Also remember to be diligent about nonfood sources like lotions and shampoos etc. and make sure you have gotten a new toaster and replace wooden cutting boards and your can opener. Hope you feel better soon and welcome to the boards.

Oh and Heinz ketchup is gluten free, I don't knoiw about the others.

Lister Rising Star

its a rollercoster from what i can tell in the begining, i have only been gluten free for about 2 weeks. the first three days i acually felt way better and continued to improve for a week until this past wensday all the symptoms came back all at once, it can be really rough just hang in there hopefully it will all work out for you

Lisa Mentor

As stated, check your shampoos, soap and anything that can get into your mouth.

to start you out, I use:

Dove shampoo

Dove Diod.

Dove Soap

Crest Toothpaste

There are other that are gluten free, but this is a quick fix. Ask someone on this site to send you the Delfi Forum Product list.........that will give you all sorts of gluten free products by brand name.

Learn as much as you can, and do searches on this site and you will learn and enormous amount of information about what is safe and what it is not.

Two weeks is just the beginning. Welcome to to forum. This site will be a life saver for you, just read, monitor and read somemore. Everything you need is here.

Good luck and keep posting. Lisa

kjw290 Newbie
its a rollercoster from what i can tell in the begining, i have only been gluten free for about 2 weeks. the first three days i acually felt way better and continued to improve for a week until this past wensday all the symptoms came back all at once, it can be really rough just hang in there hopefully it will all work out for you

You can feel bad for awhle. I'm not sure how you found out you had celiac disease but in my case I lost alot of weight because of diarrhea, I took the b12 which helped also your body loses so much in so little time you have to build yourself up again. It seems like I was one of the luckly ones, they went right for the biopsy test. It's A very hard diet to follow, and the more I read on the effects of celiac disease the more I want to follow the diet strictly! hang in there, better days are coming! <_<

Canadian Karen Community Regular

Hi Guys!

Nini has an awesome newbie folder put together that includes the delphi list. PM NIni and she'll e-mail it to ya!

Karen


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Mabc Apprentice

Thank you so much!!!

I will keep on trying. It is hard, but I'm so grateful to finally have hope to have control over my symptoms.

Thanks

Mabc Apprentice

I was diagnosed with chronic fatigue syndrome in 1998, but years before that I was diagnosed with irritable bowel syndrome. I don't have the rash, I do have chronic 24/7 sinusitis and difficulty walking from weakness. I also have hypoglycemia.

I decided to try the gluten-free diet, though I don't have a diagnosis. If the diet helps, I will figure I have it. I'd rather have the diagnosis, but I've learned to not rely much on my doctors for help. Nothing against them, but evidently the doctors I've had just didn't want to do anything for me after deciding I had CFS and irritable bowel.

I recently found out my nephew had a rash and allergic to wheat, and both of my sons have ALWAYS had an itchy rash on their arms since they were very little. I don't know if it is THE rash, but both have severe constipation and fatigue. I stopped growing in 7th grade (maybe that's normal I don't know) and I'm very low weight even though I eat plenty. I got very very sick in 1998 and told the doctor that it felt like there was no food getting to any of my cells. I was extremely weak. I have a daughter who has been 35 pounds for 2 years (she's 5) and has tummy aches every day. She has also had anemia.

I realize it still may be that I don't have celiac, but I'm willing to try it and see what happens. I'm so sick and tired of being sick and tired! :blink: I am just learning everything and really happy to find this forum and would love to hear any thoughts.

Thanks for the help.

zip2play Apprentice

OMG a 5 year old that has weighed 35 pounds for 2 years..... :unsure: Doesn't your doctor find that odd/horrible? I have a 4 1/2 year old and she weighs 45 pounds and she is tall and well w/n normal ranges.

It sounds to me your entire family has tummy issues! I certainly hope you get the answers you need!

MONICA

dionnek Enthusiast
Hi Guys!

Nini has an awesome newbie folder put together that includes the delphi list. PM NIni and she'll e-mail it to ya!

Karen

how do I pm Nini? I'm new to this too.

judy05 Apprentice
Hi, I just joined this forum. I was hoping someone could answer a question for me. I've just begun the gluten-free diet 4 days ago and some of my symptoms like weakness and fatigue have gotten worse. Is this to be expected? I suppose it could be due to other foods that I possibly unknowingly can't tolerate that I have now increased to fill the void. But I just wanted some comfort to know that this is to be expected.

BTW is all ketchups okay or not? I'm a little confused. Thanks for any info.

Mabc

I think everyone feels a little worse in the beginning, I know I did. It took a whole summer for me. I lived on plain chicken, pork chops, mashed potatoes, applesauce, and bananas. It takes a while to get the gluten out of your system. For me giving up dairy made all the difference. It was almost a year to feel really good. It all depends on how long you were sick. I had another problem (GERD) which caused other problems. Keep up the good work, you will feel better with each passing day. Heink organic ketchup is not gluten free, I found out the hard way...

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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