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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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    • Matt13
      Certified gluten free oats

      By Matt13 · Posted

      Thanks for the awnsers i understand there is maybe system reaction but do they create or cause villious atrophy? And igmf you it them for example a couple of days di they instantly induce marsh 3b?
    • robingfellow
      Can gallbladder issues cause symptoms of celiac disease?

      By robingfellow · Posted

      My gallbladder was at 94% ejection fraction according to my HIDA scan before surgery, when the "normal" range is considered to be between 30-80%, so the surgeon recommended removal because I had been experiencing severe chronic upper quadrant pain and even vomiting despite having a strong stomach. A biopsy after surgery showed intense inflammation suggesting my gallbladder was on the verge of bursting if I hadn't gotten it removed.   The last time my iron and vitamin d levels were checked post-gluten free diet they were in a normal range (I take 60mg iron tablets every other day, and vitamin D capsules daily) I do also take magnesium daily, specifically 400mg magnesium bisglycinate at night to aid my sleep since I try to avoid taking melatonin due to personal preference.   I'll definitely have to keep in mind the point about celiac possibly causing gallbladder problems, I'll probably wait until I can see a proper GI and get their input before I attempt to reintroduce gluten back into my diet that way any reaction I may or may not have can be properly assessed.
    • Mr-Collateral531
      Can gallbladder issues cause symptoms of celiac disease?

      By Mr-Collateral531 · Posted

      I have dealt with gallbladder issues on-and-off for about ten years now. I was diagnosed with biliary dyskinesia in 2016 but chose to keep my gallbladder. Then in July 2022, I was diagnosed with celiac disease. Your surgeon is partially right in that your gallbladder can definitely cause some of those issues. However, the flip side to the coin is celiac can cause issues with your gallbladder. It’s a lesser studied area of disease manifestation, but limited research has shown a correlation between celiac, gallbladder dismotility, and how a gluten-free diet can help increase the gallbladder ejection fraction. Which literally happened in my case. In 2016 my HIDA scan measured my gallbladder ejection fraction as 29%. Then in 2023 after going strict gluten free, my HIDA scan measured it as 100%. It’s not perfect. I get right upper quadrant pain from time to time still. But at least I got that piece of evidence for myself.  I haven’t found any empirical studies on it but I have a theory. The gallbladder stores your bile for digestion. When the food enters your small intestine, the cells of your duodenum secrete cholecystokinin (CCK). CCK is what tells your gallbladder to empty. It’s literally Greek for “bile sac move.” Since the duodenum is a prime location for epithelial cell damage in celiac, it seems very possible that this can alter production of digestive hormones like CCK. As the small intestine begins to heal it produces more CCK and therefore the gallbladder can once again function. If you care to share, why did you need to have yours removed? In regards to the low iron and low vitamin D despite supplementation, that is also common in celiac. I fought vitamin D deficiency for almost a year despite taking 5000 IUs a day. I don’t have anemia, but I know I can use more iron based on my last round of blood work. Best I can say is you need to right cofactors as well. My vitamin D level virtually stayed the same for three different blood tests all 12 weeks apart. One was even after taking the prescription vitamin D of 50,000 IUs once a week. Once again, something not all doctors seem to know, but a nutrient deficiency isn’t necessarily treated by just taking more of that nutrient. Vitamin D metabolism requires many cofactors and processes in the small intestine, liver, and kidneys. And iron metabolism requires many cofactors as well including vitamin D. The biggest thing is to find a supplement regiment that works for you. Do you take specific vitamins or do you take a multivitamin? How much iron is in the supplement you take? What type of iron is it? Do you take magnesium? Another big game changer for me was adding 450mg/day of magnesium supplements for about two months and then dropping to 200mg/day. I would take 250mg of magnesium aspartate at lunch time and then 200mg of magnesium glycinate around 7:00pm. Magnesium is a huge cofactor for both vit D and iron metabolism. And that’s just one. Zinc, copper, vitamin K, boron, vitamin B6, folate, vitamin B12, and vitamin C are all contributing cofactors to vitamin D and iron metabolism. But too much supplementing is also dangerous. I’ve also been through iron overload and zinc toxicity in my post-celiac journey. Once again, doctors just saying to do one thing without considering anything else. I hope this helps and if you have any more questions don’t hesitate to ask.          
    • trents
      Certified gluten free oats

      By trents · Posted

      Your doctor may or may not be well-informed about the issue you raise so I would not agree that he/she would necessarily be the best person to rely on for a good answer. The question actually raises two issues.  The first issue has to do with cross contamination and individual sensitivity as dublin55 alluded to. Oats and wheat are both cereal grains that are typically grown in the same areas, transported in the same trucks, stored in the same silos and processed on the same equipment. So, there is usually significant CC (Cross Contamination). With gluten free oats, there is some effort to separate these processes that would otherwise cause significant CC and "gluten free" oats should meet the FDA requirement of not exceeding 20 ppm of gluten. But this 22 ppm standard is not strict enough for more sensitive celiacs. "Certified gluten free" oats (and other food products are held to a stricter standard, that being not exceeding 10 ppm. But even that is too much gluten for some super sensitive celiacs and will cause a reaction. The second issue with oats has nothing to do with gluten per se but with the protein found in oats called "avenin". Avenin has a structure similar enough to gluten to cause a reaction in some celiacs. This is called "cross reaction" not to be confused with "cross contamination" discussed in the previous paragraph. So, for whatever reason, whether cross contamination or cross reaction, it is estimated that about 10% of celiacs react to oats.
    • dublin555
      Getting rid of the belly bloat

      By dublin555 · Posted

      Karen, that sounds really tough. You must find both RA management and your new gut problems extremely irritating to handle at once. Together with your pain relief you still experience ongoing bloating complications that drag on without a resolution. Of course visiting a doctor to obtain a proper celiac diagnostic evaluation becomes necessary when no formal diagnosis has been received. Your journey toward recovery has been lengthy yet it brings comfort to notice your progress during this time. This support group offers you valuable help because there are people experiencing the same concerns with you. Working through your issues will be easier.
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