Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Basic Question Needing Basic Answer


lorka150

Recommended Posts

lorka150 Collaborator

I started a gluten-free diet in late August. Went dairy free around the same time, then quickly casein free.

I have had a few slip ups, and glutenings, but I think I've done really well.

Before diagnosis I lost about 10lbs in a matter of weeks. Since then, I've lost about 15 more. I haven't lost more, except when I get glutened, I drop a few, and then they seem to come back and flucuate around the same area.

So now it's been about 3 months.

How long until most of you started noticing a significant weight gain? Ever? Did you just steady out?

I'm so impatient. Does anyone else feel like this? Could it be from my accidental glutenings? Could it be that maybe I am really damaged? (I did not get a biopsy, and I will not).

Any ideas? Thanks.


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



Celiac.com Sponsor (A8-M):



cgbenson Newbie

any type of cheating on a celiac diet is going to have consequences. however, if you have not had a biopsy to confirm celiac it is impossible to know what could be causing your problems. I strongly recomend the biopsy. it is quick about 5 minutes and pain free.

I started a gluten-free diet in late August. Went dairy free around the same time, then quickly casein free.

I have had a few slip ups, and glutenings, but I think I've done really well.

Before diagnosis I lost about 10lbs in a matter of weeks. Since then, I've lost about 15 more. I haven't lost more, except when I get glutened, I drop a few, and then they seem to come back and flucuate around the same area.

So now it's been about 3 months.

How long until most of you started noticing a significant weight gain? Ever? Did you just steady out?

I'm so impatient. Does anyone else feel like this? Could it be from my accidental glutenings? Could it be that maybe I am really damaged? (I did not get a biopsy, and I will not).

Any ideas? Thanks.

<{POST_SNAPBACK}>

Canadian Karen Community Regular

Hi Lorka:

In order for you to get your biopsy now, you would have to go back on gluten for three months, I don't think you are willing to do that by the sounds of it.....

Have you always been on the petite/fragile/thin side? Perhaps it is just your physical constitution and gluten-free or not, that is how you are going to be.... My older daughter, who is now 12, is almost taller than me (I am 5'9") and wears a size nine ladies shoe. From day one, she has always been off the scale, much larger than normal (not fat or anything, just incredibly solid and big boned....) My younger daughter on the other hand, who is now 7, has always been in the lowest percentile and pediatrician says she will always be petite - that is just her make-up and nothing is going to change that..... She is the tiniest, petite, little angel you could ever imagine....... I think a lot of the way we are is genetics (and not only inheriting crappy genes like celiac genes), but other things we inherit (physical traits, size, shape, etc....)

Either way, you must also consider that it has only been since August that you have been gluten free. For many people, it takes longer than that for their body to correct itself...... Be patient, it will come......

Hugs.

Karen

cornbread Explorer
any type of cheating on a celiac diet is going to have consequences. however, if you have not had a biopsy to confirm celiac it is impossible to know what could be causing your problems. I strongly recomend the biopsy. it is quick about 5 minutes and pain free.

<{POST_SNAPBACK}>

After 3 months gluten-free wouldn't a biopsy automatically be negative?

Lorka - a lot of celiac's are the reverse. I lost 8lbs when I first went gluten free and gain a few each time I get glutened.

MySuicidalTurtle Enthusiast

Are you really under-weight? It varies from person to person on how you gain weight back. Just talk to your doctor about it if you are concerened about your weight.

ravenwoodglass Mentor
if you have not had a biopsy to confirm celiac it is impossible to know what could be causing your problems. I strongly recomend the biopsy. it is quick about 5 minutes and pain free.

<{POST_SNAPBACK}>

I have to strongly disagree with this. There are risks inherent with any procedure, if a dietary change has helped you know your answer. As to other food intolerances they can be found by working with an allergist and doing an elimination diet. As to weight gain or loss, I beleve it varies for many. Most of my weight loss was fluid, I had severe edema but it wasn't noticeable to doctors because it was spread over my whole body, (I even lost 2 shoe sizes!!) my weight has stabalized now, 3 years gluten-free, and while I am on the light side at 105 lbs at 5'4" I feel healthy unless glutened.

Carriefaith Enthusiast
How long until most of you started noticing a significant weight gain? Ever? Did you just steady out?
I started noticing my weight coming back around 3-6 months into the diet, it was a slow process.

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



Celiac.com Sponsor (A8-M):



swittenauer Enthusiast

I guess everyone is different. My husband lost about 25 or so pounds before he was diagnosed. It took him about 2 months before it was back for the most part. Being totally gluten free is the key.

jenvan Collaborator

i agree with what's been said here--you can't expect real weight gain until you have been vigilantly gluten-free for a while--no mistakes.

elisabet Contributor

My son lost some kilos after going gluten-free,and after about 5 months he gained wheight.

just be patient!!

  • 2 weeks later...
Guest Kalynn

Guest Kalynn

Guest nini

I had the opposite problem. I was overweight before my dx, and after going on the gluten-free diet my weight fluctuated up and down at first as my system started to heal, now 2 1/2 years into it I have lost 85 pounds and have gone from a 3x to a 14/16 (med) in size... actually eating more food now than I ever did when I was sick. It just takes the body a while to figure out where it's supposed to be and then eventually it should normalize out.

I completely disagree that the biopsy is the only way to find out what's going on. The biopsy can only confirm damage IF it has occurred throughout the entire intestine, and the procedure involves risks, however small. AND if the Dr. doing to procedure doesn't take enough samples or takes them from places without damage, it can't confirm anything. It can only confirm a dx of celiac, but it can NEVER completely rule it out.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,960
    • Most Online (within 30 mins)
      7,748

    PMcCauley
    Newest Member
    PMcCauley
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Once you've completed testing and still don't have improvement, start a trial gluten free diet.  Looking for imprvement that may indicate Non Celiac Gluten Sensitivity, which is 10 times more prevalent than Celiac Disease. Deficiencies in vitamins B6, B12, D, and C can manifest as skin rashes.  Virtual guaranty you are deficient in vitamin D.
    • cameo674
      So those rs numbers tell researchers where the dbSNP is located in a Genome so that other reasearchers or an AI system can look in that specific spot for that Snip of information.  You can look those rs # s by pasting the numbers after rs into the lookup on this page https://www.ncbi.nlm.nih.gov/snp/ right under the Blue header bar at the top of the webpage.  Since you are not a researcher, I do not know how this will help you though.
    • cameo674
      So I posted here once before, and everyone advocated that I get into a GI doc.  I finally got into my functional health appointment on 6/16 to get my blood results evaluated and get the Gastro referral. I was told that I would be fortunate to see a gastro doctor by December, because of the number of people waiting to get in, but they did believe that I needed to see a GI doc among others.  Well, the stars aligned. I got home. I looked at MyChart and it showed an appointment available for later that same day. I never clicked so fast on an appointment time. The gastro doc ran some additional blood work based off the December values that had confirmed my daughter's suspicion that I have undiagnosed stomach issues.  Gastro has also scheduled me to get an upper endoscopy as well as a colonoscopy since it has been 8 years since my last one. She said it would rule out other concerns if I did not show Celiac per the biopsies.  Those biopsies will not occur until August 29th and like everyone here stated, Gastro wants me to keep gluten in my diet exactly as everyone suggested. To be honest, I was barely eating any gluten since I figured I would have plenty of time to do so before testing.  Doc is also looking for the cause of the low level heartburn that I have had for 30 years.  I have mentioned the heartburn to PCPs in the past and they always said take a tums or other OTC drug.  The upper endoscopy is for ruling out eosinphilic esophagitis, h. pylori, and to biopsy the duodenal bulb and second portion to confirm or exclude celiac. The colonoscopy will have random biopsies to rule out microscopic colitis. I didn't really catch her reasoning for the bloodwork.  Doc looked at the December numbers and said they were definitely concerning for Celiac.  She also said, “Hmm that’s odd; usually it’s the reverse”, but I did not catch which result made her say that. She seems very through.  She also asked why I had never bothered to see a GI before.  To be honest, I told her I just assumed that the heartburn and loose stool were a part of aging.  I have been gassy since I was born and thought constantly passing gas was normal?  Everyone I know with Celiac have horrible symptoms that cannot be attributed to other things.  They are in a lot of stomach pain.  I do not go through that.  I attribute my issues to the lactose intolerance that comes with aging, but have slowly been eliminating foods from my diet due to the heartburn or due my assumption that they did not agree with a medication that I was prescribed. I have already eliminated milk products especially high fat ones like ice cream; fats like peanut butter; acids like citrus and tomatoes; chocolate in all forms; and breads more because it is so hard to get in 100 grams of protein if I eat any foods that are not a protein.  I would not have even done the testing if my daughter had not brought up the fact that she thought I might have an undiagnosed condition since she has issues with bloating and another sibling has periodic undiagnosed stomach pain that GI docs throw pills at instead of helping.  Who knew that Bristol scale 5 and 6 were not considered normal especially multiple times a day? I watched my MIL go through basically the same bowel changes starting at 50 so to be honest, I really did think it was normal before this week's appointment.   December 2024's blood tests ran through Quest Labs were:  Deamidated Gliadin (IgA) 53.8 U/mL Above range >15.0 U/mL; Deamidated Gliadin (IgG) >250.0 U/mL Above Range >15.0 U/mL; Tissue Transglutaminase (IgA) 44.0 U/mL Above range >15.0 U/mL; Tissue Transglutaminase (IgG) <1.0 In range <15.0; Immunoglobulin A (IgA) 274 mg/dL In range 47-310 mg/dL 6/16/25 bloodwork:  Until today, I did not really know what all the four tubes of blood were for and since I did not understand the results, I got into the clinical notes to see what was ordered, but it did not exactly explain why for everything. Immunoglobulins IGG, IGA, IGM all came back in range:  IGG 1,010 mg/dL In range 600-1,714; IgA 261 mg/dL In range 66-433 mg/dL; IGM 189 mg/dL In range 45-281.  How do these numbers help with diagnosis? Google says she checked these to see if I have an ongoing infection? I do have Hashimoto's and she did say once you have one autoimmune disease others seem to follow. Celiac Associated HLD-DQ Typing: DQA1* Value: 05; DQA1*DQA11 Value: 05; DQB1* Value: 02; DQB1-DQB11 Value: 02; Celiac Gene Pairs Present Value: Yes; Celiac HLA Interpretation Value: These genes are permissive for celiac disease.  However, these genes can also be present in the normal population. Testing performed by SSOP.  So google failed me.  I think these results basically say I have genes, but everybody has these genes so this test was just to confirm that there is a vague possibility?  Maybe this test result explains why I do not have the horrible symptoms most individuals with celiac have?  I told the GI my assumption is that I am just gluten intolerant since I do not have the pain? So maybe this test explains why I have antibodies? Comprehensive Metabolic Panel: Everything was in the middle of the normal range.  Google says this just says I am metabolically healthy. Tissue Transglutaminase ABS test results – Done by the Mayo Clinic’s Labs –  T-Transglutaminase IGA AB --Value: 3.1 U/mL – Normal Value is <4.0 (negative) U/mL; Tissue Transglutaminase, IgG -- Value: 15.3 U/mL High -- Normal Value is <6.0 (Negative) U/mL – Interpretation Positive (>9.0) – These are the only labs the GI did that have been labeled Abnormal.  I am confused at how/why these came back different than the December labs? Because these numbers seem to be the opposite of what the were in December and I know I have eaten less gluten.  They were definitely measured differently and had different ranges. This must be why she said they are usually opposite? Molecular Stool Parasite Panel said I was Negative for Giardia Lamblia by PCR; Entamoeba Histolytica by PCR and Cryptosporidium Parvum/Hominis by PCR.  So at least I do not need to do a parasite cleanse like everyone on TikTok seems to be doing. So I guess, I am just really asking why the Tissue Transglutaminase numbers are different.  Was it because they were truly different tests? Is it because I have not consumed the crazy amount of gluten one is suppose to eat prior to testing? To be honest, I thought that was only for the biopsy testing. I generally only eat twice a day, and the thought of eating the equivalent of 6 slices of bread is daunting. Even in my youth, I probably only consumed the equivalent of maybe 3 slices a day. Like I said before, now I usually focus on trying to eat 60 gram of protein.  I am suppose to consume 100 grams, but have failed to succeed. I will focus on eating gluten starting in July now that I know my procedure date.
    • Scott Adams
      I agree with @trents and wiping down the spot you eat your lunch, and eating the food your brought from home should be safe for even sensitive celiacs. Gluten can jump on your food, so it would likely better better for you to continue eating where you prefer.
    • Scott Adams
      This article might also be helpful, as you could have DH: https://www.celiac.com/celiac-disease/understanding-dermatitis-herpetiformis-the-skin-manifestation-of-celiac-disease-r6361/
×
×
  • Create New...