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 Celiac.com!
    eNewsletter
    Donate

Still Having Problems


medictao

Recommended Posts

medictao Newbie

Hello all,

Newly diagnosed with celiac and still trying to figure it all out, but am not too sure. I thougtht I had the diet down, and restrict everything in my power, but am still losing weight. I feel fine and have not any attacks since becoming g.f., but the weight issue is really bothering me. Has anyone else had the same problem, or have suggestions. I keep a food diary and have scrutinized it over and over and can't find a reason. Thanks in advance.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



medictao Newbie

I forgot to mention that 4 months post diagnosis and had my levels drawn and they are higher than the initial value. Frustrated!!!

Link to comment
Share on other sites
happygirl Collaborator

Has your doctor run any additional bloodwork, or talked with you about your concerns? Do you have any other medical problems?

Link to comment
Share on other sites
medictao Newbie

I have talked to him about my concerns but since I was "officially" diagnosed only a few months back, I get the feeling like I'm being put off. He didn't seem to concerned about the levels and talked about retesting in 6 months from now. I'm not sure I feel comfortable with that time frame, but know he is a competent doc. No other med problems, or other allergies that I know of. I feel good and am symptom free... Has anyone heard how long it takes for thier weight to stabilze: either gaining or in my case loosing?

Link to comment
Share on other sites
JNBunnie1 Community Regular
I have talked to him about my concerns but since I was "officially" diagnosed only a few months back, I get the feeling like I'm being put off. He didn't seem to concerned about the levels and talked about retesting in 6 months from now. I'm not sure I feel comfortable with that time frame, but know he is a competent doc. No other med problems, or other allergies that I know of. I feel good and am symptom free... Has anyone heard how long it takes for thier weight to stabilze: either gaining or in my case loosing?

I think the important thing is that you feel better. It took me over a year to start gaining the weight I needed, so patience is definitely a virtue with this disease. I think you're doing fine, the important thing is that you feel better. Just don't do drinking Ensure or any crap like that to try to gain wieght, that stuff's full of sugar, which won't help you gain weight.

Link to comment
Share on other sites
Ursa Major Collaborator

Have you eliminated dairy and soy from your diet? They could possibly be the cause of your ongoing problems. And are you eating enough saturated fats? Because despite the negative press saturated fat is getting, it is essential for every cell in our bodies.

The very best source of saturated fat is cold-pressed, unhydrogenated coconut oil. It is the most heat stable oil as well, and is perfect for cooking and baking. Since it doesn't get liquid until heated, you can't use it for salads, olive oil is still best for those.

Also, you need to make sure you are getting enough protein.

Try eating six smaller meals, rather than three large ones, and make sure you eat healthy snacks in between.

If you eat right, get enough fat, make sure you are gluten-free, then you just need to be patient. It will come.

Link to comment
Share on other sites
medictao Newbie

Thanks for both of your kind words. I'm sure your right but I guess with the acutity of loosing weight, being diagnosed, and then having to revamp my diet...whew! I might also being having some c.c. issues the more I think about things. I have a 2 year old son and wife who are not g.f. and think it is a major source. But what can you do? Not help with his care, or not play with him because of c.c.? How do other people deal with family members who are not g.f.? I think its a bit unfair to change my childs diet (not that getting him to eat healthy isn't hard enough), but I also know that I can't keep having my body being insulted. Thanks for letting me vent :)

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



April in KC Apprentice

You definitely need to examine the possibility of cross contamination. Also examine carefully what you are eating. Is it possible that you are eating something you think is safe but is not?

You might throw out a sample day's diet for folks here to examine.

My weight loss did not stop right away after gluten free. It did slow down after about a month, and it probably stopped by around three or four months gluten-free.

I got more sensitive a week or two after going gluten free.

You might buy your own set of dishes just for you at home. You're not, for example, buying Van's gluten free waffles and making them in the same toaster as your wife's gluten-containing bread, are you? If so, buy a separate toaster and insist that it never be used for gluten-containing foods.

Also buy separate condiment tubs and jars, and label with your name in magic marker on the lids. Don't allow someone to stick a knife in your tub of margarine, for example.

We keep a stash of plastic knives and spoons in the regular silverware drawer along with our nice silverware. We do this as a reminder to use plastic knives ONE TIME ONLY in things like the jelly jar, etc. Use once, no double dipping, and then throw away. We actually are gluten free at home, but we do the plastic silverware thing because two of us (myself and our youngest boy) do not tolerate rice and corn, and the others (my two oldest sons) do. My husband tolerates gluten, but he eats gluten free at home and does not complain. He has been incredibly supportive. He tends to get his gluten fix when he's out for lunch at work. Every once in a while, he orders a pizza when he's at home alone. He uses paper plates in that case and is very careful in how he cleans up.

Your child might be okay eating more gluten-free foods than he or she currently eats. Have you tried finding a brand of gluten-free cookies/snacks, etc., that they like? My kids really like Montanas cookies and Kinni-Toos by Kinnikinnick. Calm your child's carb cravings with safe things like popcorn, potato chips, Tings (you can get at health food stores), etc. I'm not suggesting you put your child on a gluten-free diet, but you could kind of make it a rule that when YOU prepare food for your child, it will be gluten free. Does that make sense?

Sorry you're still losing weight. If you are not having any attacks, that might be a good sign that things will eventually stabilize. However, if antibodies remain high after a time, then you are still getting gluten.

Watch out for seasoning mixes. I just have a heck of a time finding taco seasoning, etc., that doesn't contain gluten, whether declared or undeclared.

Our eating style changed. We bought a Foreman grill and started eating more grilled meats, chicken, fish, shrimp, etc. Besides my infant son, I have the most sensitivities (gluten, rice, corn, milk products), so I have had to learn to cook some quick meals for myself that I can store and eat from during the week. That way, I wasn't tempted to eat things that others were eating if they were not safe for me.

Good luck. I feel for you.

April

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,072
    • Most Online (within 30 mins)
      7,748

    SherryT
    Newest Member
    SherryT
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Fluka66
      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
×
×
  • Create New...