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Newly Diagnosed; Still Struggling!

ashylu929

By ashylu929
in Coping with Celiac Disease

Recommended Posts

ShayFL Enthusiast
ShayFL
Posted

People come in here for advice. And in so doing, you will get a variety of responses. Each individual has to decide for themselves how to keep safe.

It may be that as long as you dont eat gluten and avoid anything that goes on your mouth that contains gluten, you will be fine. But if you find yourself eliminating those things, but you still are still sick, then you might be more inclined to consider some of the things mentioned in here that might at this moment seem "extreme".

None of us old-timers are trying to be "extreme". We are just here day in and day out listening to people who are an absolute mess because they think they are gluten-free, and are still sick. When making a few of the changes we have mentioned has made a BIG difference for some people. We just try to help newbies avoid these very things we see cause problems for people over and over again.

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ksymonds84 Enthusiast
ksymonds84
Posted
Thank you! I too think we need to be realistic & do what we can. I have 2 dogs, a cat and a turtle--all of which i wash my hands after being in contact with them, their toys or their food. I appreciate the advice about the toasdter as i just cannot afford a separate one right now as well as the info about teflon pans---what about glass/bare metal pans?

thanks,

alicia

I don't worry about the glass and bare metal pans because you can clean them easy with hot soapy water or the dishwasher. I only worry about pans that are scratched up or coranders that have tiny holes. Gluten is very sticky! There are toaster sleeves available on line if you google them. I've seen a 2 pack for 4.00. They are reusable and you don't have to get a new toaster.

cjsmommy Newbie
cjsmommy
Posted

:huh: I too am newly dx/ Neg blood test; Positive biopsy. My small bowel and liver are damaged. The last three years I have being treated for RA,SLE, vasculitus, and the list goes on.......I have still remained "sick". I have not been able to get rid of the constant vomiting or feeling like I am going to; and I can't get rid of my migranes for very long spells of time. I had a very, VERY difficult pregnancy, was on TPN much of the 36 weeks ( have a healthy & growing 3 year old now; but by the grace of God :) ) While this seems to be an easier thing to treat than SLE & RA; it is OVERWHELMING!

Everything is having to change....nothing from what I put on my face, in my hair, or down my throat seems safe anymore........I am trying to change as many things as we can, but still learning, and for sure so confused and maybe even a little mad......but I will see what happens.....I have handled a lot of other things the past few years, and am so sick of always being sick...tired of taking enough meds. to choke a horse;maybe this is finally the answer.

Trachellium Newbie
Trachellium
Posted

Hi there- total newbie, thought I would jump on with you all because this seems most relevant to what my situation is. Just got diagnosed with Celiac (today actually) via blood test. I too don't really have any of the digestive problems, my digestion seems just fine, maybe some gas and bloating here and there but nothing too uncomfortable. My worst complaint is the brain fog, absolutely debilitating, work is suffering, personal relationships, etc. Also, everything I come across says there is weight LOSS that comes with the malabsorption, but I have gained weight, could this be due to the body continuing to be hungry because of the lack of nutrients? I guess I am just a little confused because my symptoms don't really fall in line with the ones that are listed on the major websites. I have been struggling with this beast for about 3 years now and am excited at the possibility of finally having cracked it but I also don't want to get my hopes up. Thanks in advance for any insight and support.

mushroom Proficient
mushroom
Posted
Also, everything I come across says there is weight LOSS that comes with the malabsorption, but I have gained weight, could this be due to the body continuing to be hungry because of the lack of nutrients?

There is no particular set of symptoms that fits everyone. They are many and varied and come in all different combinations. Weight loss was always thought typical but many of us gained weight whilst eating much less than others around us. I know, I was one of them. A year gluten free and I have now lost 44 lbs and continuing to lose, so there is hope.

I think that it is this wide variety of symptoms that has left so many of us undiagnosed for so long.

ang1e0251 Contributor
ang1e0251
Posted

I was one of those who has gained much weight with no seeming logic. Now I know. I minimized my digestive problems as normal for one who's gallbladder had been removed. I was clueless. Once I went gluten-free, it was amazing the change. Not just digestive but neurological and mental. I'm telling you, you are in for a great revelation on how life can really be. Pain in the butt diet? So what...I would have paid any amount of money for a treament to feel as healthy and normal as I feel now. The great thing is I don't have to! I don't need Chemo or narcotics or physical therapy; I only need to eat properly! I'm grateful, blessed and any other great like adjective you'd like to coin. Mental heel click!

aliciatakescare Newbie
aliciatakescare
Posted

I will take all the encouragement, support and advice I can get. I will do whatever it takes to not feel totally ill and like it is all in my head again. I'm delighted I found this forum as you have all been very good to me :)

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  • Posts

    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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