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

Help, I'm Withering Away!


elle's mom

Recommended Posts

elle's mom Contributor

OK, here comes a semi-rant:

Since being on the gluten free diet (also dairy free), it has been almost 9 months, I have lost 30+ pounds. This is not a good thing, really. I was two months post-pardum when starting the diet, so I could afford to lose some, but now I am about 15 pounds below my "normal" weight. I am 5 foot and right now at about 98 pounds. I'm also nursing so that doesn't help I know. I counted my calories for a couple days because I wanted to prove to myself that I am eating enough; I was only at about 1500-1800 which with nursing is not really enough, I don't think. The thing is, I feel like I am really eating a lot, and I am following my appetite, whenever I get hungry I eat.

I always have three good meals, then 2-3 snacks. My usual snack is whole nuts by the handfuls and Lara Bars. I have a large apple with PB every morning. Lunch is usually leftovers with veggies OR a chicken or beef rice tortilla wrap with some type of beans (black or pinto) and rice, OR sometimes a chicken salad with lots of nuts (and I like bacon on it, kind of a modified cobb). Dinner we do a meat (fish, chicken, or beef, rarely pork), with either rice or potato, and 1-3 types of veggies (usually carrots, brocolli, and/or green beans). I always snack in the evening, sometimes nuts and a handful of allergen free choc. chips or some gluten-free corn chips and salsa, sometimes another apple/PB.

I am avoiding eggs, yeast, and soy too so I am limited on what other foods I can do. What else can I do? My husband says I need more carbs, but I don't want to risk cc with a lot of processed foods, I do eat whole rice and corn products though. He also says I just need to exercise and build muscle, which I know is true, but my energy level is in the tank. I've been gradually working my way into stretching and doing light weights and things like sit-ups and jumping jacks with the kids and such.

My cousin just told me last weekend, "you need to get back on the dairy or people are gonna start thinking you're anorexic!". THANKS!! I'm the farthest thing from anorexic! I take my prenatal vit still, B12, Ca/Mg/D every day; but my malabsorption number (through enterolab) was so high.......I know that is my problem. I just don't know what else to do. Any suggestions?? Thanks.


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

Well, you know you need to eat more, so find other foods that you'll eat. Higher fat foods are good - coconut milk in dishes (or to drink, if you can get the dairy replacement one), avocados, plenty of oil on the veggies. Eating more carbs might help, but it doesn't have to be grains - potatoes, beans, lentils.

Can you add another meal into your day, ON TOP of what you already eat?

Erin Elberson Newbie

First perhaps recheck with your doctor to see if there is another reason (besides just time to heal the gut) why you're not absorbing. That's the main thing. In the meanwhile, yes, eat more. You are correct-if you're losing weight, 1800 calories isn't meeting your maintenance needs.

Consider adding a rice or hemp protein powder/shake into your diet-liquid calories are a bit easier to consume. You can mix with almond or coconut milk to add more calories. Nut butter out the wazoo, and Tiffany's suggestions were spot on. Even make a "rice pudding" of sorts with rice and coconut milk to snack on-grab a spoonful every time you pass the fridge.

missy'smom Collaborator

I sympathize so much. I'm in a similar weight boat for differernt reasons-both health and additional dietary restrictions-I'm dairy free and have to stay very low-carb as well as multiple food allergies/intolerances. It seems that you are doing a lot right. I would suggest keeping the protein up. Protein and fats are the only ways I have of keeping my weight on and it has helped. Make sure you are getting a good serving at each meal-I get 4 0z. or 20 some grams of protein from meat alone at each meal, 4 meals a day, just to give you an example. I could stand to up it a bit too. I didn't quite believe it when a doctor recommended it but it has worked. I hear you about the exercize too that has been a challenge to me for various reasons and I've been fearful of doing things that will cause me to lose. I have chosen to take the slow and steady route and start with very very simple few exercizes at home done on a regular basis to build strength, tone and flexibility. Things like a stretching routine in the a.m. or before bed, using handweights for the arms-if I am going to have scrawny arms at least the can be toned and have little muscles-scrawny but buff!, push ups, hold and release type stomach exercizes. I pick one thing and work on consistantly doing it and then add the next and so on. It makes a difference. Now, I see that you are already doing those things-well, consider this encouragement to keep up the good fight. Maybe when you feel strong enough you could go to the Y and have them set up a 15 min. routine on 5 machines to do strength training twice a week. I tried it and enjoyed it but needed a protein packed meal after or I had problems with fatigue. Otherwise, just be patient with your body as it heals. I KNOW it's hard to hear those comments with the "A" word!

cloesb Newbie

Get your thyroid properly checked. There is a gigantic link btwn celiac and thyroid problems.

uote name='elle's mom' date='14 March 2010 - 01:21 AM' timestamp='1268544091' post='598527']

OK, here comes a semi-rant:

Since being on the gluten free diet (also dairy free), it has been almost 9 months, I have lost 30+ pounds. This is not a good thing, really. I was two months post-pardum when starting the diet, so I could afford to lose some, but now I am about 15 pounds below my "normal" weight. I am 5 foot and right now at about 98 pounds. I'm also nursing so that doesn't help I know. I counted my calories for a couple days because I wanted to prove to myself that I am eating enough; I was only at about 1500-1800 which with nursing is not really enough, I don't think. The thing is, I feel like I am really eating a lot, and I am following my appetite, whenever I get hungry I eat.

I always have three good meals, then 2-3 snacks. My usual snack is whole nuts by the handfuls and Lara Bars. I have a large apple with PB every morning. Lunch is usually leftovers with veggies OR a chicken or beef rice tortilla wrap with some type of beans (black or pinto) and rice, OR sometimes a chicken salad with lots of nuts (and I like bacon on it, kind of a modified cobb). Dinner we do a meat (fish, chicken, or beef, rarely pork), with either rice or potato, and 1-3 types of veggies (usually carrots, brocolli, and/or green beans). I always snack in the evening, sometimes nuts and a handful of allergen free choc. chips or some gluten-free corn chips and salsa, sometimes another apple/PB.

I am avoiding eggs, yeast, and soy too so I am limited on what other foods I can do. What else can I do? My husband says I need more carbs, but I don't want to risk cc with a lot of processed foods, I do eat whole rice and corn products though. He also says I just need to exercise and build muscle, which I know is true, but my energy level is in the tank. I've been gradually working my way into stretching and doing light weights and things like sit-ups and jumping jacks with the kids and such.

My cousin just told me last weekend, "you need to get back on the dairy or people are gonna start thinking you're anorexic!". THANKS!! I'm the farthest thing from anorexic! I take my prenatal vit still, B12, Ca/Mg/D every day; but my malabsorption number (through enterolab) was so high.......I know that is my problem. I just don't know what else to do. Any suggestions?? Thanks.

AmyT Newbie

First of all, what a rude thing to say! It is so interesting to hear different reactions to the disease. However, if you are 5ft, and 98 pounds. You still fall in the normal weight range for BMI, and a little low on height weight charts.

I am in the same boat. I am 5ft4 and weighed 124 when I discovered I was gluten and dairy sensitive. I have lost 11 pounds in 8 weeks. I definitely wasn't heavy to begin with. However, I do think that this may be my "normal" weight range now. Ever since I can remember gaining weight I always felt "bloated" and puffy. I believe this was all from the disease. I am 40 years old and I believe I had it since I was a child. It came and went so I never had any consistent symptoms until last year. I never had a eating disorder, but I was always watching my what I ate so I wouldn't gain weight. Also, I never looked toned so I always looked kinds puffy.

That being said, I would eat a lot of protein, have you tried protein shakes? I eat protein 3 meals a day. I have been following Marksdailyapple.com and he promotes the primal living lifestyle, with plenty of protein, tons of fruits and veggies, so I have tons of energy. I do have grains here and there, but like you I am skittish of cc. So I either bake it myself or don't eat it.

I have a hard time eating a lot at once, so I make sure to get plenty of healthy fats as well, like avocados and seafood.

I guess that's all for now! Good luck!

Pac Apprentice

Check if you are able to digest well everything you eat - for example, nuts are full of 'healthy' fats, but not everybody is able to get that fat out of them or waists too much energy in the process, the same applies to whole-grain rice, corn, some fruits, meat...

Veggies are healthy, but if you eat too much of them, you might feel full before you actualy get enough energy and protein your body needs.

Make sure you eat enough fat - fatty fish, avocados, even the "bad" saturated fat from meats, add olive oil to your salads... If you are able to tolerate butter, melt some in every meal you make, or add some healthy oil instead.

Try eating more energy-rich food - banana instead of apple, more potatoes instead of rice, dried fruits like cranberries, raisins, fruit/nuts mixed with honey...

Consider taking some multivitamin with digestive enzymes, and probiotics. For me enzymes made a big difference, even after 6 months gluten-free.

Also remember that everybody is different and some of the advise you get might not work for you at all. I had no energy at all until I switched from "energy-full" complex carbs and "healthy fats" to no-starch, low-fibre diet full of fatty pork, eggs and full-fat dairy. So don't care too much about what others deem healthy, eat what's good for you.

Good luck.


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.

  • 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. - Russ H replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    2. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    3. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    4. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,582
    • Most Online (within 30 mins)
      7,748

    Kim RS
    Newest Member
    Kim RS
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary. 
    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
×
×
  • 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.