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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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    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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