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I Am Soooo Frustrated


ami27

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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


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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.


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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.

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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