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Newly diagnosed - Very anxious

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C4Celiac Contributor
C4Celiac
Posted
26 minutes ago, sadfaceemoji said:

just wondering if anyone else continued to lose weight a short while after going gluten free? is this normal? i don't know if it is stress or that i've started eating a lot more fruit and veg or something else. im being as careful as possible & i know it may take a while to get my weight 'back to normal' but any advice / experiences with weight appreciated 

I lost about 10 pounds after going gluten free...   In the beginning before I was diagnosed and still eating gluten I only lost about 3 - 4 pounds.   After I changed my diet I lost a ton of weight..   another 7 pounds at least..

almost 2 years later I still haven't gained my normal weight back. I only gained about 3 pounds back...  My antibody level is still high but barely out of normal now ( 5 points away from normal ).. just weak positive level so i doubt it's the celiac anymore at this low level..   I think its the diet itself...  

I bet if I started eating gluten again for a month I'd gain all my weight back by the end of the month. There's no fat in this stupid gluten free diet..  

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trents Grand Master
trents
Posted
5 hours ago, sadfaceemoji said:

just wondering if anyone else continued to lose weight a short while after going gluten free? is this normal? i don't know if it is stress or that i've started eating a lot more fruit and veg or something else. im being as careful as possible & i know it may take a while to get my weight 'back to normal' but any advice / experiences with weight appreciated 

How many calories per day are you taking in? Realize that when we cut out gluten we typically eliminate a major source of calories in our diet. Have you been checked for SIBO and H. Pylori? Pain under the ribs might be gallbladder issues?

sadfaceemoji Rookie
sadfaceemoji
Posted
  • Author

I realise that maybe i am not taking in enough calories - I started tracking yesterday out of interest! I did not realise quite how little calories are in gluten-free alternatives. 

Also, i will look at tests for SIBO, H.Pylori and gallbladder. 

I have had full blood tests recently including most issues (first appointment with GI so he was eager to do this) which just indicated some borderline vit deficiencies. 

I am still struggling with on-and-off pain in my ribs which can either be in the left or right , sometimes worse after eating ANYTHING , sometimes random. Again, not sure if stress-related.  Also struggling with on-and-off loose or 'mushy' stools too (Sorry - TMI). Not sure if normal even after 2 months gluten-free? 

Thanks again for replying all.  

 

 

trents Grand Master
trents
Posted

Your stools should be firming up by now if you have been eating gluten free, unless the cause is some other medical condition or another food intolerance not gluten-related. Don't worry about "TMI". In this forum context, it is just necessary to talk straightforwardly about those things. If the pain under the ribs can be on either side then it's not gallbladder issues. Gas or gastritis maybe.

MADMOM Community Regular
MADMOM
Posted
2 hours ago, trents said:

Your stools should be firming up by now if you have been eating gluten free, unless the cause is some other medical condition or another food intolerance not gluten-related. Don't worry about "TMI". In this forum context, it is just necessary to talk straightforwardly about those things. If the pain under the ribs can be on either side then it's not gallbladder issues. Gas or gastritis maybe.

i had same on and off pains in first 8 months but actually gained weight that i needed but not to this extent - my dr says it’s a good sigh that im absorbing foods and vitamins but i also went through early menopause so it’s tough to lose  - watch what you eat keep track and take the correct supplements - you will see slowly but surely you will feel better 

  • 4 weeks later...
Arseling Newbie
Arseling
Posted

I’ve just been diagnosed myself. I’ve been fighting iron defficiency anemia for a lo g time. After 6 years and 5 doctors, I finally found a GI that knew his beans. After a double scoping (the freakin’ third, gonna start charging toll lol!), he found something that was concerning enough to have me get a blood test done. He had them test for celiac and lo and behold! There it was. 
It’s only been a couple weeks, but there is a noticable difference already. It’s nice being able to eat without my stomach hurting or running to the bathroom! I sleep a bit better now too. It’s going to be a long road, but I’m looking forward to trip! It’ll be a relief to feel better!

So if anyone has any suggestions, I’m all ears! Thanks!

trents Grand Master
trents
Posted

Welcome to the forum, Arseling!

Avoid eating out like the plague.

This also may be helpful: https://celiac.org/about-the-foundation/featured-news/2016/01/gluten-free-101-need-know/

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Wheatwacked Veteran
Wheatwacked
Posted

Here is the list of what I eat. They are all gluten free with little chance of cross contamination. To increase muscle mass eat more protein and less carbs.

  • Cottage Cheese 
  • Oranges
  • Waternellon
  • Meat
  • Bananas
  • Vegatables

Meal planning for athletes

"A growing body of research indicates that protein intakes well above the current Recommended Dietary Allowance help to promote healthy aging, appetite regulation, weight management, and goals aligned with athletic performance. "  Protein “requirements” beyond the RDA: implications for optimizing health 

Scott Adams Grand Master
Scott Adams
Posted
3 hours ago, Arseling said:

I’ve just been diagnosed myself. I’ve been fighting iron defficiency anemia for a lo g time. After 6 years and 5 doctors, I finally found a GI that knew his beans. After a double scoping (the freakin’ third, gonna start charging toll lol!), he found something that was concerning enough to have me get a blood test done. He had them test for celiac and lo and behold! There it was. 
It’s only been a couple weeks, but there is a noticable difference already. It’s nice being able to eat without my stomach hurting or running to the bathroom! I sleep a bit better now too. It’s going to be a long road, but I’m looking forward to trip! It’ll be a relief to feel better!

So if anyone has any suggestions, I’m all ears! Thanks!

This article may be helpful:

 

Arseling Newbie
Arseling
Posted
On 6/22/2022 at 1:23 PM, trents said:

Welcome to the forum, Arseling!

Avoid eating out like the plague.

This also may be helpful: https://celiac.org/about-the-foundation/featured-news/2016/01/gluten-free-101-need-know/

I do. Co-worker gave me a link that searches for gluten free places to eat. Or at least have gluten free items.

trents Grand Master
trents
Posted
3 minutes ago, Arseling said:

I do. Co-worker gave me a link that searches for gluten free places to eat. Or at least have gluten free items.

Ordering gluten free items, even from the gluten free section of a menu, avoids only part of the potential problem. It's what goes on in the kitchen with regard to preparation and handling that is more the problem in restaurants. Here are some cases in point. You order gluten free spaghetti but they may boils those gluten free noodles in the same pot as they do wheat noodles. Or, you order a hamburger without the bun. But they cook it on the same griddle as they do breaded fish sticks. Or you they offer sandwiches with gluten free bread. But they cut the sandwich with the same knife they used to cut the other customers' wheat bread sandwiches. Most people who are new to the celiac experience don't understand the danger of cross contamination and don't take it seriously. It's not a matter of just cutting out major sources of gluten. That's just a low gluten diet, not gluten free.

Arseling Newbie
Arseling
Posted
4 minutes ago, trents said:

Ordering gluten free items, even from the gluten free section of a menu, avoids only part of the potential problem. It's what goes on in the kitchen with regard to preparation and handling that is more the problem in restaurants. Here are some cases in point. You order gluten free spaghetti but they may boils those gluten free noodles in the same pot as they do wheat noodles. Or, you order a hamburger without the bun. But they cook it on the same griddle as they do breaded fish sticks. Or you they offer sandwiches with gluten free bread. But they cut the sandwich with the same knife they used to cut the other customers' wheat bread sandwiches. Most people who are new to the celiac experience don't understand the danger of cross contamination and don't take it seriously. It's not a matter of just cutting out major sources of gluten. That's just a low gluten diet, not gluten free.

Thank you! Didn’t think about that. DUH! The adjusting is difficult, but I’m getting used to it...slowly lol! They took away my 5 basic food groups...fried, greasy, bbq, chinese and beer! The bbq really hurt. But it needed to be done. One day at a time.

Arseling Newbie
Arseling
Posted

Thank you! Didn’t think about that. DUH! The adjusting is difficult, but I’m getting used to it...slowly lol! They took away my 5 basic food groups...fried, greasy, bbq, chinese and beer! The bbq really hurt. But it needed to be done. One day at a time.

Wheatwacked Veteran
Wheatwacked
Posted
27 minutes ago, Arseling said:

fried, greasy, bbq, chinese and beer!

Those were just diversions to keep you eating wheat which they add to these foods because wheat makes you want to eat more. Wheat is addictive.

You stopped eating fried. Did you get better?

You stopped eating bbq. Did it help anything?

Gave up Chinese and beer. Any better? Use Tamari instead of Soy Sauce.

I don't like beer but was addicted to Vodka untill I started GFD. My 30 year stint with alcoholism just ended that week.

Gave up gluten. AHA!

Just make sure the greasy, fried, Chinese bbg has no gluten added. Best, learn to make your own.

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

      By trents · Posted

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

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • 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
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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