petitojou

On 9/29/2025 at 4:02 PM, cristiana said:

Not a scientific reply, but I thought I'd just chime in to reply the first part of your question: how long?   Before I started to have gastric symptoms, I weighed about 66 kilos, and in the course of the following months, I seem to recall I lost about 6 kilos.  From memory the last 2 or 3 kilos dropped off even when I was beginning to eat gluten free, from May to September, but then, finally, the weight returned again, in the run up to Christmas 2013.  The loss after I gave up gluten was, I think, in part because in those early months I didn't know what I was allowed to eat, so wasn't eating very much. 

But the good news is the weight in the end returned so successfully that I'm actually on a diet now, trying to lose it!😊  

It can be scary losing a lot of weight when you are trying not to, but the advice above is great, and before long you should start to put on the weight again.  It might be worth keeping a food diary to see what healthy calorie rich food you can tolerate, and try to incorporate more of that into your diet at this time.

 

Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!!

Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶

On 9/29/2025 at 2:54 PM, Scott Adams said:

First, it's fantastic news that your diarrhea has resolved after a month—that is a huge and critical sign of healing, confirming that the gluten-free diet is starting to work. While it feels slow, this stabilization of your digestive system is the essential foundation upon which weight gain is built. Given the severity of your weight loss, dropping from 50kg to 35kg, it is very normal for the body to need a significant amount of time to recover. The fact that your vitamin levels are stable is a positive sign that your body is now absorbing nutrients, which is the first step. Many people in the Celiac community report that noticeable, consistent weight gain often doesn't begin until several months after their digestive symptoms have fully settled, as the intestines need that time to repair the villi responsible for absorption. It sounds like you are doing everything right by working with your specialists and ruling out other issues like thyroid complications, which, despite the fluctuating TSH, your doctors have confirmed are not a primary concern. Please be gentle with yourself; your body has been through a major trauma. The lack of strength you feel is a direct result of such a low body weight, and as you slowly and consistently nourish yourself with safe, calorie-dense gluten-free foods, that strength will return. Stay the course with your optimism and consistency—you are on the right path, and a healthier figure is absolutely ahead.

Are you taking vitamin and mineral supplements? The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

 

 

Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌 

Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it. 

Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 

20 hours ago, trents said:

Let me suggest some possibilities for your nausea/heart burn besides gluten cross contamination that are common in the celiac community:

1. You may have other food intolerances. This is exceedingly common in the celiac community. The two most common food offenders are oats and dairy products. Eggs, corn and soy are also on that list. But it can be almost anything. You might start with eliminating oats and dairy for a few weeks and see if there is improvemen.t

2. You may have MCAS (Mast Cell Activation Syndrome)-histamine intolerance: you should research this.

3. You may have SIBO (Small Intestine Bacterial Overgrowth)

4. You may have an H. Pylori infection or a Candida yeast infection

Unfortunately, celiac disease often brings along its friends. Often it generates other health issues by the time we ever get it diagnosed such that going gluten-free is not the only answer to the problem. We can be over simplistic and naive about it in this since.

Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️

Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE).

Thank you again!! Have a blessed weekend 🤍

5 minutes ago, knitty kitty said:

 Welcome to the forum, @petitojou!

I lost a lot of weight, too.  I found that I was low in the B vitamins and other essential nutrients.  Vitamin B 1, Thiamine, is not usually tested, because blood tests are so inaccurate.  Doctors are not familiar with vitamin deficiency symptoms any more.  

Low thiamine can cause fatigue, muscle weakness, nausea, reflux, abdominal pain, and diarrhea or constipation.  In a state of low thiamine, the body burns stored fat and muscle, so unintentional weight loss and muscle weakness occurs.  The inability to put on weight occurs during low thiamine.  Low thiamine can affect the thyroid as well, causing higher TSH.  

I supplemented with a B Complex and additional Thiamine in the form Benfotiamine which has been shown to promote intestinal healing.  Diarrhea for so long affects the absorption of essential nutrients especially the eight B vitamins because they are water soluble and easily lost.  Thiamine and the B vitamins work together.  Thiamine needs magnesium to make life sustaining enzymes.  

Talk to a nutritionist or dietician about supplementing with essential nutrients and following the Autoimmune Protocol diet.  

Following the low histamine version of the Autoimmune Protocol diet is beneficial and promotes healing.  The AIP diet cuts out grains and other foods that can irritate the digestive tract.  After your digestive system heals you'll be able to add other foods back in.  For right now, focus on easy to digest meals.  

Hope this helps!

Hi! Thank you so much! This was truly helpful. Most doctors I went to were absolutely uninformed and unprepared to treat a celiac patient. I will check for all the things you shared and focus on healing first! Really really thank you! Have a blessed day. 

13 minutes ago, trents said:

Welcome to the forum, @petitojou!

You say, "Unfortunately at home, even with all the care I have, I’m still exposed to possible gluten contamination." Are you living with family who are still consuming wheat products? Are you living with your parents? Are you "at home" every day or only occasionally? Is this cross contamination you speak of from shared cooking surfaces and utensils or are wheat/barley/rye (the gluten grains) intentional ingredients in the food you share with family members? Could you elaborate please?

Hi! Thank you  

Of course! I still live with my family; there used to be six of us, and now there are four. I rarely leave the house or eat out. Although my mother has also been diagnosed with celiac disease, she does not follow the same precautions as I do. I use separate kitchen utensils (different spatulas, pans, dish towels, plates, toaster - almost everything since I’m highly sensitive), and my food is kept separate in the kitchen. The other two people who live with us consume gluten daily, but unfortunately they are not careful. Although we frequently clean the kitchen surfaces and other utensils (such as the microwave, towels, and tables), because they consume gluten constantly, there are always gluten crumbs everywhere! And more complicated contaminations have happened before. I try to eat separately in my room to avoid it as much as possible, but even on days when I am sure there has been no contamination, I feel nauseous (sometimes I feel like just the smell is enough for it). Does the food inside the fridge should also be separated and in its own shelf? I think that might be the problem too. 

I really wanted to leave my home to live a more peaceful and less stressful life in terms of cross-contamination, since the people around me are not careful, but given my current circumstances, it is impossible… so I’ve been trying to deal with it calmly? 

Hi! I was diagnosed as Celiac three months ago and I’m on a gluten-free diet for the same period. I experienced severe weight loss while intoxicated. It’s been only 1 month since my diarrhea stopped (I had them everyday, 3-4 times a day) so I know it’s too early to see crazy results, but I really wanted to hear from other Celiacs who suffered from weight loss, how long did it take to get back to a healthy weight? I have very petit frame but once weighed 50kg (110lb). Right now I’m stuck at 35kg (77lb)! Honestly quite hard because I have no strength. But thankfully my tests showed no signs of malnutrition or bad vitamin deficiency. 

I had both a gastroenterologist and a endocrinologist looking at my tests for possible thyroid problems (making it possible harder to gain weight) but both said everything was ok- even tho in two of my tests the TSH levels were significantly high and just one test with stable numbers. But T4 and T3 were normal. 

I’m trying my best to remain optimistic and consistent, but also can’t wait to see myself with a healthier figure! 

Thank you for reading and helping  

Hi! I’m so happy to have found this site. It’s been three months since I was diagnosed as Celiac and also three months since I started my gluten-free diet. 
 

September was my first month without heavy symptoms like diarrhea and extreme fatigue. But I still get frequently nauseous after eating, especially things with corn starch and the most common used flours without gluten. But even when I eat clean and fruit based, I still have nausea and deep ugly heartburns. Does anyone else feel like that? I have great difficulty in making proper and good meals due to that, since I end up reacting to anything, leading also to gastric reflux. 
 

My blood tests were okay and both my doctor and nutritionist recommend digestives enzymes- but both gave me nausea. Unfortunately at home, even with all the care I have, I’m still exposed to possible gluten contamination. Could that also be the cause? I’m still waiting to get a endoscopy done to see how everything it’s fairing, but it’s both mentally and physically exhausting since I expected to be feeling a lot better and eating better.
 

Detail: I did not have frequent nausea while gluten intoxicated! I had severe heartburn and reflux, but no nausea. 
 

Thank you so much already for anyone who reads it! ❤️

English is not my main language, so pls understand in case of any present errors! Being able to communicate with fellow tummy warriors is my joy. Blessed healing for us.