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

Gluten Free And Still Having Symptoms

KCampbell

Recommended Posts

KCampbell Newbie
KCampbell
Posted

My diagnosis of celiac was recently confirmed. I've been following a gluten free diet for about 1-2 months, although before that i was gluten free except for oats for about 4 months. Since going completely gluten free i felt better for a while but have started having symptoms again. It is the strangest thing because I have checked all the labels and know what to look for and don't cheat and dont think i've been injesting any gluten. but I get really really bloated and have diarrea and generally feel not well. And it is very random. I also have some lower abdominal pain all across the bottom of my abdomen that feels almost like a gnawing pain sometimes.

I've heard that soem people have a lactose or soya intolerance, so in the last week i've eliminated milk. I'm still eating yogourt. About a year ago which is when I started having problems, I was diagnosed with microscopic colitis - they gave me antibiotics and it cleared up.

Any thoughts? Suggestions? I'm not sure either if I should go back to the GI specialist (who wasn't very helpful in asnwering my questions) or to my family doctor for other tests. I saw a nutritionist in a group session last week and she suggested trying the dairy thing although she said the yogourt wouldn't matter.

Please help!

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

Celiac.com Sponsor (A8-M):


MDRB Explorer
MDRB
Posted

Yeah, a lot of people discover other intolerances after going gluten free. You could keep a food/symptoms diary for a while to try and pin point what is bothering your system.

You mentioned that you have checked all your food, what about any medication or supplements you are taking? Also, do you live alone? If not you may want to check out any cross contamination. Do you eat out? This could be a source of gluten.

I have been gluten free since march this year, and I still find myself having symptoms despite being 100% positive that I am not eating gluten. I have found that sugar upsets my system for some reason, and that if I eat out too much I get gluten symptoms.

If you can't figure out why you are getting sick, you should go see your doctor as you may have an additional issue.

Good Luck

AliB Enthusiast
AliB
Posted

I have noticed this a lot that some either get better for a while then go backwards or they don't really improve much at all on gluten-free, which can indicate problems with other foods such as dairy.

I recognised very quickly after going gluten-free and DF that my problem was not just gluten but carbs per se. My body just doesn't cope with them properly (hence the diabetes!). Often the gluten foods are replaced by other equally (if not more so) high-carb, high-sugar foods that the body also starts to have problems with.

Like you I have recently realised that oats are a problem for me and have been low-level 'glutening' me all the way through, so have now dropped them (whether it is the oats or CC with them I haven't a clue, but best avoided anyway), but I still need to be very careful with all starches and carbohydrate-based foods.

I went on to the Specific Carbohydrate Diet which limits carb consumption to just that in fruit, veg and nuts and added some extra protein for my Metabolic type (I am a fast-oxidiser) and that way my body seems to be healing quite well. It is a slow progress, but at least it is progress

Guest dolly1665
Guest dolly1665
Posted

:rolleyes:

Hi, I am new to this forum but when I was reading this I had to reply,

Gluten Free people ... We all need to stop using things that have CORN SYRUP in it...

And I found any corn upsets my tummy....

This may be a problem for a lot of others...

Any meat needs to be antibiotic free....

These are just a few things I have found, to help me.

Hope this will help some one else.

Dolly1665

imhungry Rookie
imhungry
Posted

I've been at this Gluten free, wheat free and Dairy free diet for about 10 months now, and I STILL have things creep in as I expand my diet. Gluten is hidden in EVERYTHING, and many things Inever expected it to be. Start writing down what you are eating, look for patterns, check the websites of the companies the food is from and look at their FAQ's or e-mail them about being gluten free. The food labelling laws are not on our side, i.e. potato chips can be made with flour sprinkled on them to keep them from sticking together while processing and because the flour is not an "ingredient" it does not have to be listed.... Spice is code for "probably has flour in it"...

Any specific questions you have, shoot. We might have already asked the companies.

AliB Enthusiast
AliB
Posted

Over the last 2 weeks I have been 'glutened' twice. This time I was able to recognise it for what it was - before, I just had odd reactions that I assumed were to other foods or because my gut was still not healed and finding some foods hard to cope with.

After the latest 'proper' reactions though I suspect that it may be that my immune system is finally kicking back in and any glutening is now far more apparent. It took three and a half months of gluten-free and Dairy-free for mine to start working. Other people may get to that stage sooner or later than me.

I realised it was the oats and the 'odd reactions were to those or CC within them, and have dropped them but am far more careful now I know more about it, to avoid anything that may be suspect.

We ate at IKEA this evening and although assured the food was gluten-free I am still waiting to see if anything happens! I did indulge in a hot choc with dairy and have experienced some bloating and gas but it's not too bad - I might just have got away with that!

MDRB Explorer
MDRB
Posted
I've been at this Gluten free, wheat free and Dairy free diet for about 10 months now, and I STILL have things creep in as I expand my diet. Gluten is hidden in EVERYTHING, and many things Inever expected it to be. Start writing down what you are eating, look for patterns, check the websites of the companies the food is from and look at their FAQ's or e-mail them about being gluten free. The food labelling laws are not on our side, i.e. potato chips can be made with flour sprinkled on them to keep them from sticking together while processing and because the flour is not an "ingredient" it does not have to be listed.... Spice is code for "probably has flour in it"...

Any specific questions you have, shoot. We might have already asked the companies.

I found that anything in an ingredients list that I can't pronounce probably has gluten in it. Any kind of preservatives, thickening agents, flavors, starches... or really anything that you don't recognize or that you don't know what it is derived from... all of these things should be checked before eating.

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

Have you checked all of your hygeine products i.e. tooth paste, lip gloss/ chapstick, shampoo? Not that anyone intentionally ingests shampoo, but it does happen.

I was feeling sick and went through the products I was using, there was barley in the deodorant. Don't ask my how that cross-contamination happens!!? By the way the closest thing I can think of is laundry causing cross contamination.

gfpaperdoll Rookie
gfpaperdoll
Posted

IMO yogurt does matter, it is dairy. Do not eat it & see if you get better.

AndrewNYC Explorer
AndrewNYC
Posted

Try using an elemental formula like Tolerex for a week and see how you feel on it. Don't eat or drink anything except water. Once you're symptoms subside, reintroduce other foods

My diagnosis of celiac was recently confirmed. I've been following a gluten free diet for about 1-2 months, although before that i was gluten free except for oats for about 4 months. Since going completely gluten free i felt better for a while but have started having symptoms again. It is the strangest thing because I have checked all the labels and know what to look for and don't cheat and dont think i've been injesting any gluten. but I get really really bloated and have diarrea and generally feel not well. And it is very random. I also have some lower abdominal pain all across the bottom of my abdomen that feels almost like a gnawing pain sometimes.

I've heard that soem people have a lactose or soya intolerance, so in the last week i've eliminated milk. I'm still eating yogourt. About a year ago which is when I started having problems, I was diagnosed with microscopic colitis - they gave me antibiotics and it cleared up.

Any thoughts? Suggestions? I'm not sure either if I should go back to the GI specialist (who wasn't very helpful in asnwering my questions) or to my family doctor for other tests. I saw a nutritionist in a group session last week and she suggested trying the dairy thing although she said the yogourt wouldn't matter.

Please help!

linuxprincess Rookie
linuxprincess
Posted

You said you had eliminated the dairy, but you were still eating yogurt, which is dairy.

Here's why so many GFers are not able to handle milk products: Caesin.

This has an extremely similar chemical structure to gluten so when its in your body, you treat it as gluten and have symptoms. They might be the same as gluten symptoms or a little different, but you'll know.

"Milk Fat" is usually okay on a label because this is normally ghee which has no milk solids which is where the caesin is. ( Ghee is clarified butter; boiled butter essentially, and tasty )

I would try going 100% dairy free for say a month to give your body time to adjust and get whatever is left out of your system and then see how you do. Still having symptoms after that I'd eliminate something else or go have an allergy test done if you are able to.

Hope this helps, and good luck!

MDRB Explorer
MDRB
Posted
You said you had eliminated the dairy, but you were still eating yogurt, which is dairy.

Here's why so many GFers are not able to handle milk products: Caesin.

This has an extremely similar chemical structure to gluten so when its in your body, you treat it as gluten and have symptoms. They might be the same as gluten symptoms or a little different, but you'll know.

"Milk Fat" is usually okay on a label because this is normally ghee which has no milk solids which is where the caesin is. ( Ghee is clarified butter; boiled butter essentially, and tasty )

I would try going 100% dairy free for say a month to give your body time to adjust and get whatever is left out of your system and then see how you do. Still having symptoms after that I'd eliminate something else or go have an allergy test done if you are able to.

Hope this helps, and good luck!

Hi,

I just wanted to add to this and say that some people do not have a caesin problem but a lactose problem. This often happens to celiac patient because the villi produces the enzyme that helps you digest lactose (in dairy) and when it is damaged from gluten exposure you no longer produce that enzyme properly.

If it is a lactose problem not a caesin problem then you could take something like 'lactaid' and still enjoy your dairy foods, or alternatively stick to low lactose dairy including hard cheeses such as parmesan and cheddar.

Hope this helps :)

lurven71 Newbie
lurven71
Posted

Hello,

I was wondering if I could have your thoughts on something. I was diagnosed two years ago after getting to the point of nearly dying. I have maintained a gluten-free diet since then, but have continued to have strange symptoms, including new symptoms I didn't have when I was eating gluten. The worst part has been continued stomach, skin, mood swings, terrible PMS, fungal infections, horrendous cravings for chocolate, alcohol and sweet things, and panic problems. I seem to feel totally out of control most the time. They are very random. I have had a gluten-check up and my panels all come back at zero level of anti-bodies, and I am sure it's not gluten.

What I started to notice was that when I was trying to lose weight (and cutting back on sweets) all of my symptoms would go down to almost nothing. After doing a lot of reading, I started to consider that maybe I have a problem with candida (yeast overgrowth). For the last two weeks I have been avoiding sugars (including fruit), alcohol, too much starch, and taking pro-biotics, and holy cow, I am almost back to normal!!!!

I am in the UK (where I dont have a choice of what doctor I see) and my doctor has diagnosed me with panic disorder and tried to get me to take anti-depressents. I told him that I thought he was terrible wrong, and that I was sure it was food related. I am starting to think I might be right.

Anyone else has similiar experiences? I noticed many people on here have the same problems I do. Could it be from sytemic yeast overgrowth???

purple Community Regular
purple
Posted

Somewhere on here I read that it could be an allergy to corn and its in everything, keep your eyes and ears open just incase.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,948
    • Most Online (within 30 mins)
      7,748
    Stephanie94
    Newest Member
    Stephanie94
    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)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • 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.