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

I Am Soooo Frustrated


ami27

Recommended Posts

ami27 Apprentice

I felt so good when I first went gluten free. Now I'm back to being irritable, weak feeling, fatigued, etc. I'm reading that is very common. It doesn't make me feel any better or know what to do. I've cut out dairy in addition to the gluten. I'm still not any better. So it has to be something else in addition to dairy. How would I go about learning how to do a proper elimination diet? I think that is the route I need to go. I wish this was easy. But, just when I think I have things figured out...more questions come up.

Ami


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



Celiac.com Sponsor (A8-M):



lonewolf Collaborator

The other common offenders are corn, soy and eggs. Try eliminating these first (I know, easier said than done), and then trying a true elimination diet. When I started my journey on a restricted diet I only ate fish, rice, sunflower seeds, most fruits and most vegetables for a whole year. It worked great though - all my health problems cleared up by the end of that year. I slowly started adding foods back in and now only avoid gluten, dairy, soy and eggs. (And I can handle small amounts of eggs now, after 10-1/2 years.)

ami27 Apprentice

I'll try that. I have been eating eggs in the morning. I will stop that along with the corn tortillas. I don't consume soy so that shouldn't be too difficult. I really want to feel better. I was just discussing with my fiance' that I'm going to try only eating fish, chicken, rice, veggies and fruit and see how I feel. It's just really frustrating to have to be so restrictive. We have 2 boys also and I have figure out food for them and myself. It's almost like I have to decide 2 distinct meals each time we eat, one for them and one for myself.

Ami

lonewolf Collaborator

I hear you on how frustrating it is. I spent a year making two different meals most of the time. The good news is that it helped and that I got over most of my other food restrictions. Now it seems that only avoiding gluten, dairy, eggs and soy is a breeze. And I can make meals that everyone eats with no problems.

celiacgirls Apprentice

I've re-read some of your posts and it looks like you have only been gluten-free since a little before Thanksgiving. Are you sure you have all traces of gluten and/or dairy out of your diet? I'm asking because after I had been gluten-free for a few months, I noticed I was tired and irritable again. I had been eating out at supposedly safe places then. I decided to stop doing that and be much more in control of all of the trace amounts and cc in my diet. That has helped. My kitchen at home is very close to being gluten-free since my husband is the only one who eats gluten. He has his own bread and toaster but everything else is gluten-free. Since I've done that, I've noticed that when I have eaten in a restaurant, that feeling comes back. And for me, it lasted 2 1/2 weeks. So if you are making mistakes or getting cc'd even every few weeks, I think that could be the cause of your problems.

ami27 Apprentice

Karen,

Thanks for the info. And you are right I've only been gluten free since the day after T-giving. I was eating out, but have stopped that too. I only eat at home and I take my lunch to work. Both of my boys got A honor roll so I told them I'd take them to Chili's as a treat. We went last night and I sat there and drank water while they all ate. It just isn't worth it to me anymore to even try to eat gluten-free out. So maybe in the past 3 weeks I was getting gluten while eating out and I'm suffering the residual effects. I am not a patient person in case you haven't noticed ;) I felt so good that first month or so. I want to feel that way again! So I'll continue to make the best choices I can. And of course all the wisdom here on this board helps tremendously.

Ami

RiceGuy Collaborator

One of the mistakes I first made was not replacing the wheat stuff with enough gluten-free grains and other things. After switching to a whole grain brown rice, and looking up and adding some other grains and stuff, that seems to have helped. I do know however, that there is a lot of damage from years of glutening to repair, so I have to be patient too.

For the fatigue, try a vitamin B12 subligual supplement. The methylcobalamin form is apparently the best according to the research. Just be sure to check the additional ingredients.


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



Celiac.com Sponsor (A8-M):



Nancym Enthusiast

I've discovered that I can only tolerate seeds and some nuts in small amounts. Sunflower seeds give me the WORST diarrhea, same with pumpkin seeds.

kbtoyssni Contributor
I'll try that. I have been eating eggs in the morning. I will stop that along with the corn tortillas. I don't consume soy so that shouldn't be too difficult. I really want to feel better. I was just discussing with my fiance' that I'm going to try only eating fish, chicken, rice, veggies and fruit and see how I feel. It's just really frustrating to have to be so restrictive. We have 2 boys also and I have figure out food for them and myself. It's almost like I have to decide 2 distinct meals each time we eat, one for them and one for myself.

Ami

Eventually I would move to cooking one meal for everyone. Cooking two meals is an invitation for extra stress and cross contamination issues.

  • 2 weeks later...
hathor Contributor

Here is a description of an elimination diet:

Open Original Shared Link

I'm sorry -- I realized after this post I replied with the same information in another thread you started ...

tarnalberry Community Regular

If you had been eating out, that could be part of the problem. Even with a number of places I feel quite safe at, I keep it to once a week at a maximum - and that often is a *rare* occurance, and only when I'm *very* confident of the location and dish I'm ordering. There's just too much risk of contamination.

Additionally, cutting out the exercise could be making you feel worse as well, if you used to be a very regular exerciser. And you might look at how else the macronutrient content of your diet has changed to see what your body is trying to adjust to.

  • 1 year later...
Michelle B Newbie

Be warned - some people are intolerant to sunflower too

I've been gluten free for years now, with a few hairy moments when I accidentally ate something with gluten in (why, why, don't Kelloggs put it in on the label!) but gluten free for ages.

But now I'm reacting again. Weak, trembling, irritable, diarrhoea, constant upset stomach, headaches, and a massive massive weight gain. Can't work out what it is, so cutting out soya and milk for while.

But I did notice I got a stomch ache after eating crisps - so sunflower oil going out too.

Bit by bit, the food I can eat is going down to carrots and turkey! (Bananas and raisins make me ill too)

It's all getting very frustrating!

Goodness knows what I'll happen when I go on holiday, and will have no control over the food I eat.

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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fermented foods, Kefir, Kombucha?

    2. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

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

    • Total Members
      132,877
    • Most Online (within 30 mins)
      7,748

    Ruth Margaret
    Newest Member
    Ruth Margaret
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • xxnonamexx
      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • 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.