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

Pretend I'm A Newbie!

Matilda

By Matilda
in Coping with Celiac Disease

Recommended Posts

Matilda Enthusiast
Matilda
Posted

..

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Hi Matilda, and welcome to this board (well, you said to pretend you're a newbie :P )..........sorry, couldn't resist.

Your plan sounds like a good one. Also, have you ever thought of doing an elimination diet? I know, it's hard to even THINK of cutting out more foods. But still, you may have to. Have you followed the links in my signature yet? You may find some clues there.

Also, especially rice (besides eggs and soy) will cause just about the same symptoms as gluten with me. Stomach ache, nausea, fatigue and diarrhea are some of them.

I hope you figure it out, it can be so frustrating!

hez Enthusiast
hez
Posted

Have you kept a food diary? That might help to pin point a particular food. Have you gone through everything to make sure it is gluten-free? Glad to hear that the kitties are :) Another thing you might want to think about is having your thyroid checked. I know that can really mess things up. Just a thought.

Hez

Matilda Enthusiast
Matilda
Posted
  • Author

..

Nantzie Collaborator
Nantzie
Posted

I would suggest you check all of your personal care products to make sure they're all gluten-free. I've run into some problems with hair and makeup products that don't have any questionable ingredients listed, but they cause me to get glutened anyway. I think it's just a problem of cosmetics and shampoos and things like that not having the same rules that they have to follow as food.

Nancy

Matilda Enthusiast
Matilda
Posted
  • Author

..

Nantzie Collaborator
Nantzie
Posted
Thank you Nancy,

First thought: Good grief Nancy, do you think I'm completely uneducated!!! :(

Second thought: Actually there are 3 things I put on my face every day that I've never checked up on. I can't believe I've let this slip by! How many times have I read this advice?

Good suggestion! :)

Thanks,

Matilda

Anyone else? Remember I'm a newby. I know nothing. At least, I seem to have got very complacent!

Thanks.

Sometimes newbies need to have their hands held for a little bit..

Now, dear, you know that white flour has wheat in it right..? :lol:

Hey! No throwing stuff!

:P

Nancy

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

Celiac.com Sponsor (A8-M):


AndreaB Contributor
AndreaB
Posted
Sometimes newbies need to have their hands held for a little bit..

Now, dear, you know that white flour has wheat in it right..? :lol:

Hey! No throwing stuff!

:P

Nancy

:lol::lol::lol:

How about getting rid of the rest of the casein for six months and see if you feel better. Goat's milk.....I absolutely don't like it. Allergic too. :P

aikiducky Apprentice
aikiducky
Posted
How about getting rid of the rest of the casein for six months and see if you feel better. Goat's milk.....I absolutely don't like it. Allergic too. :P

This was my thought, too. How serious have you been about casein? I find that anything with even a trace of cross contamination with cows milk will give me symptoms just as bad as gluten. It's even more of a pain than eliminating gluten but really if it's what you need to do then you should do it.

Ok a really obvious question but the yoghurt is also made with goats milk right??? You definitively shouldn't be having cows milk yoghurt. :o Yoghurt might have less lactose than plain milk, but it still has casein.

As it happens I can have some goats cheese without trouble but some people are also sensitive to the casein in all goats milk products. So the kefir and yoghurt might be a problem and you should probably see what happens if you leave them out for a while.

Hope this helps... :)

Pauliina

gfp Enthusiast
gfp
Posted

Ok then same advice I give ALL noobies... :ph34r:

Drop everything with allergens for 3 months and I mean milk, soy specifically but you can remove anything YOU suspect... and then start adding stuff gradually and one at once like goats cheese....

Take NO CC risks and NO hidden gluten/soy/casein/lactose risks...

Just go totally natural for 3 months.

happygirl Collaborator
happygirl
Posted

Matilda,

I'm actually in a very similar place to you right now! (Unfortunately for both of us!)

I have gone through a similar process....I'll PM you later this morning.

Good luck, dear!

Laura

elye Community Regular
elye
Posted

Hi, Matilda,

My good friend has been feeling generally lousy now for the last three or four years, and last year when I was diagnosed with celiac, I passed my education-by-the-seat-of-my-pants along to her. She went gluten-free along with me, and while feeling somewhat better, is still exhausted/joint pain/headaches etc. Tests have been inconclusive. So, she went on the caveman (paleolithic? just plain old-fashioned?) diet (much like what gfp has described) in the summer and is now feeling some REAL improvement. Sometimes I will see her in tears, as she can't believe how long she's gone feeling so unlike this--i.e., normal. She will have to eventually try to figure out what in the processed foods is toxic for her, and as we all know that is a big list of possibilities. But for now, she's eating like we did thousands of years ago. Not easy, but I think well worth a try! Hope you're better soon.

gfp Enthusiast
gfp
Posted
Not easy, but I think well worth a try! Hope you're better soon.

Easy is relative......

Looking back I think its much harder to eliminate foods one by one which is what I did for 6 months ....than eliminate everything then slowly add them and on top of that I think mostly we all tend towards doing the gradual elimination BUT its way more confusing ...was it the soy or was it the milk???? and the whole delay thing with intolerances just makes this harder and even more confusing... was it the soy last week or the milk yesterday???

In the end I'm eating soy and milk... my casein intolerance is much more controllable than gluten and manageable so I eat limited dairy ... try and go goat over cow etc. but its not like being gluten-free all or nothing for me....

Soy, I never had a prob BUT my mom does/did....

I call it common sense not to eat something that might push you to an intolerance so I eat soy sparingly...

Jestgar Rising Star
Jestgar
Posted

Hi Matilda,

I tend to eat a lot of whole foods, so I rarely have to deal with this, but there is some additive in some sauces that turns everything in my body to water. If you were feeling okay until you started adding processed foods, maybe it's a chemical sensitivity. Go back to eating what you ate when you felt good.

CarlaB Enthusiast
CarlaB
Posted

I'm happy to say that I've found out what my problem is and am starting to feel much better! For me it was adrenal fatigue (you can google to see if it fits). With being sick and under constant inflammation for so long, our bodies get tired. It's all dietary, lifestyle, and supplement changes, so if the symptoms fit, give them a try. Actually, the advice given for adrenal fatigue is good for literally everone!

I also had a hair analysis done. It was interesting because it shows how your body is actually using the vitamins, minerals, etc. It was infomative and even reflected that I am having an autoimmune reaction, am prone to having low thyroid, adrenal fatigue, hypoglycemia, anemia, anxiety, and fatigue -- all stuff I already knew. The lab my doc used is Analytical Reseach Labs., Inc. The said when I talked to them that they have a website. Their phone number is (602)995-1580. All the reports were very comprehensive and give very clear recommendations, so you could easily go directly to the lab yourself.

Food diary and eliminating processed food -- both sound like good ideas.

Archived

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

Go to topic listing

  • 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. trents
      - trents replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would...
    2. trents
      - trents replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac...
    3. Gigi2025
      - Gigi2025 replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

      No, I've not been diagnosed as celiac. Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction. However, avoiding it here in the states. Thanks everyone for your responses.
    4. Rejoicephd
      - Rejoicephd replied to JulieRe's topic in Related Issues & Disorders
      7

      Oral thrush question

      Thank you @JulieRe so much for sharing this extra information. I'm so glad to hear you're feeling better and I hope it keeps moving in that direction. I feel I'm having so many lightbulb moments on this forum just interacting with others who have this condition. I also was diagnosed with gastric reflux maybe about 10 years ago. I was prescribed...
    5. catsrlife
      - catsrlife posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results

      Back at the end of July I got this rash on both of my forearms. It started on my right and continued to the left. It was on the top and side. The rash has bumps that would pop with clear liquid if scratched. They would almost crystalize and scab up. They reminded me of chicken pox. They would scab for weeks and not heal much at all except for the blood clotting...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,897
    • Most Online (within 30 mins)
      7,748
    Sgp
    Newest Member
    Sgp
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      How Come Gluten Didnt Bother Me In Italy

      By trents · Posted

      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
    • Rejoicephd
      Oral thrush question

      By Rejoicephd · Posted

      Thank you @JulieRe so much for sharing this extra information. I'm so glad to hear you're feeling better and I hope it keeps moving in that direction. I feel I'm having so many lightbulb moments on this forum just interacting with others who have this condition. I also was diagnosed with gastric reflux maybe about 10 years ago. I was prescribed ranitidine for it several years back, which was working to reduce my gastric reflux symptoms but then the FDA took ranitidine off the shelves so I stopped taking it. I had a lot of ups and downs healthwise in and around that time (I suddenly gained 20 pounds, blood pressure went up, depression got worse, and I was diagnosed with OSA). At the time I attributed my change in symptoms to me taking on a new stressful job and didn't think much else about it. They did give me a replacement gastric reflux drug since ranitidine was off the shelves, but when I went on the CPAP for my OSA, the CPAP seemed to correct the gastric reflux problem so I haven't been on any gastric reflux drug treatment for years although I still do have to use a CPAP for my OSA. Anyway that's a long story but just to say… I always feel like I've had a sensitive stomach and had migraines my whole life (which I'm now attributing to having celiac and not knowing it) but I feel my health took a turn for much worse around 2019-2020 (and this decline started before I caught covid for the first time). So I am now wondering based on what you said, if that ranitidine i took could have contributed to the yeast overgrowth, and that the problem has just been worsening ever since. I have distinctly felt that I am dealing with something more than just stress and battling a more fundamental disease process here. I've basically been in and out of different doctor specialties for the past 5 years trying to figure out what's wrong with me. Finally being diagnosed with celiac one year ago, I thought I finally had THE answer but now as I'm still sick, I think it's one of a few answers and that maybe yeast overgrowth is another answer. For me as well, my vitamin deficiencies have persisted even after I went gluten-free (and my TTG antibody levels came down to measurably below the detectable limit on my last blood test). So this issue of not absorbing vitamins well is also something our cases have in common. I'm now working with a nutritionist and taking lots of vitamins and supplements to try and remedy that issue. I hope that you continue to see improvements in working with your naturopath on this. Keep us posted!
    • catsrlife
      Patiently Waiting to See Results

      By catsrlife · Posted

      Back at the end of July I got this rash on both of my forearms. It started on my right and continued to the left. It was on the top and side. The rash has bumps that would pop with clear liquid if scratched. They would almost crystalize and scab up. They reminded me of chicken pox. They would scab for weeks and not heal much at all except for the blood clotting. If the scab was scratched off, it would bleed and bleed until it scabbed up again. The skin has lost its pigment where the scabs are. I figured it was probably either the plant I had trimmed around the 15th or some reaction to the magnesium complex I was taking or an allergic reaction to the asthma meds I was on. I stopped the asthma meds and the magnesium. The rash seemed to get better but when I took the asthma meds it flared up again so I went to the urgent care as my doctor was unavailable. The UC doctor said it probably wasn't the meds and asked about my diet. I said I was strict keto. I usually am, but there is a story around this. I feel amazing on keto. When I eat sugar, wheat, and starchy veggies I feel horrible. Blood sugar goes up, IBS type symptoms, brain fog, etc. But I have a horrible addiction to carbs so I blow it sometimes and after Mom died in 2023, I fell off the wagon. No rashes, just weight gain. I finally went back on keto and then around that time had a piece of pizza (or so, it's hard to stop the carb rush.) So I was strict keto, off and on. She ignored that and prescribed some allergy meds. It didn't go away.  What was happening by then was that the rash was now on my upper elbows, both of them, on the back of my arms. It starts with a very itchy bump, spreads around it and sometimes just burns like crazy and other times just itches. Then it started on the sides of my knees on the oustide, a little bit down the sides of the calves. It's not as bad there as it is on my arms even though it comes and goes (and so does wheat in my diet.) I then got three tiny blisters on each hand, 3 on the insdie of my index finger on the right hand and 3 on the inside of middle finger of my left hand. There is still a little scab there even though it was two weeks ago. No more have appeared on the fingers. But right now the back of the arms above my elbows are starting to itch. At some point I started to think mites from the possum that was sneaking into our house but it's been 3 months and they would be dead already. It wouldn't be from humans because I don't go near any humans although I did take an Uber to the doctor and the bus back. Plus, it's symmetrical. It starts on one side and is almost identical on the other.  I did my DNA with Ancestry and MyHeritage. I don't have the HLA-DQ2 or HLA-DQ8. I do have HLA-DQ2.2. I took the blood test but it was negative. Then again, I don't eat wheat every day. I rarely eat it except for lately when I've been preparing for the blood test if I have to take it again. I don't like to. It makes my joints hurt, gives me brain fog, stomach problems, I sleep in the middle of the day, etc. I have a doctor appointment tomorrow. I hope that she will be more serious about this than the UC doctor was.  So I have no idea. With my luck they'll magically disappear before the doctor appointment. That's what happens with everything.
×
×
  • 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.