Jump to content

  • 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

Frustration...am I Alone?

cmadam

By cmadam
in Related Issues & Disorders

Recommended Posts

cmadam Newbie
cmadam
Posted

This is not the first time I have been on this site, but first time Im posting. I really have no one to bounce this off that understands so Im hoping you guys can help.

I was diagnosed in January (ya happy new year) and I have been gluten-free and diary free since then. I do keep a food journal, and my food intake is as follows: Weight Watchers gluten-free Yogurt for breakfast with a Med Black Ice Coffee decaf (also have gone decaf), lunch 4oz of leftovers from the dinner from the night before(see dinner for details) and for snacking through the day its almonds or 1 piece of hersheys dark chocolate minis or some UTZ chips since gluten-free , dinner is made in a wok, oil butter salt pepper , 1 frozen bag of veggies usually broccoli or brussel sprouts , and a lb of meat either steak or chicken typically and brown rice. This is enough for for the 3 of us (I dont eat it all myself). Usually have a bowl full. As for drinks ... I have water, black decaf coffee, gluten free beer or gingerale (on occasions).

Now.... I am on the bigger side (over 200lbs), yet since I have been diagnosed I have gained weight. Everyone around me sees waht i eat and drink and they even say I should be dropping like crazy but Im not. So Im frustrated with that... but what is killing me more.. is that people I know are doing the gluten-free diet just as a weight loss plan and its working ! They are shedding like nothing .... me I haveee to be on this diet for lifeee and Im gaining.. its soooo frustrating ..

I know people on here talk about the weight gain etc etc and I feel your pain, but Im not one of those that went for the gluten-free boxed items or high carb or watever, 90% of my diet comes from veggies and meat. How is it possible at my size Im not loosing, but everyoen else is ?

Someone please save my sanity and lead me in a direction...... Thank you guys

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

Celiac.com Sponsor (A8-M):


GlutenFreeManna Rising Star
GlutenFreeManna
Posted

This is not the first time I have been on this site, but first time Im posting. I really have no one to bounce this off that understands so Im hoping you guys can help.

I was diagnosed in January (ya happy new year) and I have been gluten-free and diary free since then. I do keep a food journal, and my food intake is as follows: Weight Watchers gluten-free Yogurt for breakfast with a Med Black Ice Coffee decaf (also have gone decaf), lunch 4oz of leftovers from the dinner from the night before(see dinner for details) and for snacking through the day its almonds or 1 piece of hersheys dark chocolate minis or some UTZ chips since gluten-free , dinner is made in a wok, oil butter salt pepper , 1 frozen bag of veggies usually broccoli or brussel sprouts , and a lb of meat either steak or chicken typically and brown rice. This is enough for for the 3 of us (I dont eat it all myself). Usually have a bowl full. As for drinks ... I have water, black decaf coffee, gluten free beer or gingerale (on occasions).

Now.... I am on the bigger side (over 200lbs), yet since I have been diagnosed I have gained weight. Everyone around me sees waht i eat and drink and they even say I should be dropping like crazy but Im not. So Im frustrated with that... but what is killing me more.. is that people I know are doing the gluten-free diet just as a weight loss plan and its working ! They are shedding like nothing .... me I haveee to be on this diet for lifeee and Im gaining.. its soooo frustrating ..

I know people on here talk about the weight gain etc etc and I feel your pain, but Im not one of those that went for the gluten-free boxed items or high carb or watever, 90% of my diet comes from veggies and meat. How is it possible at my size Im not loosing, but everyoen else is ?

Someone please save my sanity and lead me in a direction...... Thank you guys

I'm overweight as well, I did lose 20 lbs the first month doing this, but I also eliminated all sugar. Once I added some sugar and carbs back in the weight stopped dropping. To be honest it sounds like you are not eating very much food at all. I don't know, but 4 oz of meat and veggies for lunch does not sound like much. Your body could be holding the weight because it's in starvation mode. If you really want to lose weight, I think you should increase the amount of veggies and fruit you eat and skip the chips and chocolate. Replace them with carrot sticks and other raw veggies-- I like celery, bell peppers, cucumbers and cauliflower. Also get some fresh fruit in-- bananas, apples, pears, grapes are all good portable fruits.

Are you exercising as well? If not you should start on something small that you can stick with. Even if you only do 5 minutes of exercise a day to start out it would help boost your metabolism.

Finally, I don't want to suspect this since you haven't mentioned any symptoms of it, but have you had your thyroid function checked? People with celiac seem to be more likely to have thyroid disorders.

starrytrekchic Apprentice
starrytrekchic
Posted

I also second the thyroid check. Also any other medical conditions or medications that could be causing problems with losing weight.

The best thing you can do is to count (accurately) the number of calories you're taking in every day. Depending on how far advanced your celiac was, your body may be in starvation mode, meaning losing weight for the first six months or so will be difficult.

Make sure you're getting 1500+ calories a day, more if you're not absorbing all of them. To lose weight, you don't want to be getting over 1800 or so. Keep yourself honest by writing down the calorie amounts of everything you consume (even things like sugar for your coffee) and calculating the total every day for a week, then average it out.

After that...you're going to have to look at other habits. Sedentary lifestyles are the biggest problem. Find a step-counter and put it on every morning, and check the amount every evening. You should be getting 10,000 steps in per day, if not you'll need to add walking time.

TVgirl Newbie
TVgirl
Posted

I gained weight for the first while, as my body was adjusting to finally being nourished. I'm finally, slowly losing weight.

It looks like your biggest issue is not eating enough. Breakfast is key. Eat plenty of protein at breakfast - it will kick start your metabolism and keep you full longer.

Try tracking your calories with www.dailyburn.com.

Also alcohol is brutal - even a little bit and your body will shift from burning fat to burning off the alcohol.

Wendy813 Newbie
Wendy813
Posted

This is not the first time I have been on this site, but first time Im posting. I really have no one to bounce this off that understands so Im hoping you guys can help.

I was diagnosed in January (ya happy new year) and I have been gluten-free and diary free since then. I do keep a food journal, and my food intake is as follows: Weight Watchers gluten-free Yogurt for breakfast with a Med Black Ice Coffee decaf (also have gone decaf), lunch 4oz of leftovers from the dinner from the night before(see dinner for details) and for snacking through the day its almonds or 1 piece of hersheys dark chocolate minis or some UTZ chips since gluten-free , dinner is made in a wok, oil butter salt pepper , 1 frozen bag of veggies usually broccoli or brussel sprouts , and a lb of meat either steak or chicken typically and brown rice. This is enough for for the 3 of us (I dont eat it all myself). Usually have a bowl full. As for drinks ... I have water, black decaf coffee, gluten free beer or gingerale (on occasions).

Now.... I am on the bigger side (over 200lbs), yet since I have been diagnosed I have gained weight. Everyone around me sees waht i eat and drink and they even say I should be dropping like crazy but Im not. So Im frustrated with that... but what is killing me more.. is that people I know are doing the gluten-free diet just as a weight loss plan and its working ! They are shedding like nothing .... me I haveee to be on this diet for lifeee and Im gaining.. its soooo frustrating ..

I know people on here talk about the weight gain etc etc and I feel your pain, but Im not one of those that went for the gluten-free boxed items or high carb or watever, 90% of my diet comes from veggies and meat. How is it possible at my size Im not loosing, but everyoen else is ?

Someone please save my sanity and lead me in a direction...... Thank you guys

I feel your pain but my problem is just the opposite. I am 110lbs and I am terrified I will fade away. I am actually looking for ways to gain weight on a gluten free diet. What was your normal weight before being diagnosed? I have always been thin. I have always tried to gain weight but nothing seems to work. I've been crying for 2 days now.... BUT.... its nice to know that I can east UTZ chips.....

  • 2 months later...
one more mile Contributor
one more mile
Posted

For me my weight seems little related to what I eat. It's more related to my thyroid. Please get it checked. 1 in 4 women over 40 have a thyroids that do not work properly.

  • 2 weeks later...
txplowgirl Enthusiast
txplowgirl
Posted

Hi Cmadam, I know this post was a while ago, but I hope this may help you or someone else.

I started this gluten free thing over a year and a half ago, I am 5 ft 2 and I was 205. I am now down to 160. I do not eat anything that is made gluten free except for kind bars and larabars. Those are the only gluten free items I seem to be able to handle. I eat mainly meats, some veggies, because not all agree with me and some fruits.

I eat a lot. I used to just peck at my food, never ate much but now I eat way more than I used to. I have noticed that when I stop eating a lot and just kind of do what you do my weight plateaus and I stop feeling good. I do not keep track of the calories I just eat until I'm full. I eat all day long. I eat meat of some kind for breakfast, then I eat meat, fruit and/or almonds, all day long then towards evening I eat something like a chicken salad or some kind of meat with brown rice in the evening..

May not work for everyone but I have gone off my blood pressure meds and my depression and anxiety, are gone. My cholesterol is finally good. The one thing I have found out is my anemia is finally gone after being anemic since I was 8 years old. There are a lot of other things that have reversed but I also had to get rid of dairy, soy and msg as well to finally feel good. I hope you're feeling better.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    2. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    3. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    4. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    5. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.