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Feeling So Horrible

Ys255

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Ys255 Rookie
Ys255
Posted

I know, it's only been 3 days without gluten but I find myself hard to keep up.

Stomach troubles have no issue which is nice for once, but physically and mentally I'm struggling with. My eczema has flared up big time, more redness, itchy, irritating, dryness. I've had a headache for 2 days, not like a migraine though, but it's there... I'm extremely tired to a point I can't do simple things like chores, and my anxiety, depression and OCD has really made a bigger impact.

The best way to describe is I'm plain miserable, and finding it very hard to keep going. I've been eating very healthy - yet I feel like I'm on one long hangover with more negative thoughts running through my head.

Whats going on? Am I doing something wrong?

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kareng Grand Master
kareng
Posted

Maybe gluten isn't your problem? I remember you posting your test results and they were negative? I would hate for you to miss a problem while you are assuming it is an intolerance to gluten.

nvsmom Community Regular
nvsmom
Posted

That sounds like it could be withdrawal; about a third of celiacs go through it.  :( When I went through it I as so exhausted no matter how much I slept, I was incredibly cranky and irritable, and I had a migraine that lasted for days. Overall, I was out of withdrawal after about two and a half weeks.

 

Give it time to pass, but as karen suggested, keep an eye out for other causes too - it could be a coincidence.

 

Best wishes. I hope you feel well soon.

Ys255 Rookie
Ys255
Posted
  • Author

Yeah, they were negative, but mentioned my thyroid level was something to look at. My doctor said it was at normal levels, so I'm not sure whether to go for a thyroid test or not. I guess I'll keep going with the gluten free diet for a couple of weeks and see if the symptoms fade out?

nvsmom Community Regular
nvsmom
Posted

My thyroid symptoms felt a LOT like celiac disease symptoms, and low energy was top of the list. I would get it checked. Don't accept "normal" unless they ran all thyroid tests like TSH (should be near a 1 regardless of the range), free T3 and free T4 (ideally in the 50-75% ranges of your lab's normal reference range), and TPO Ab.

The problem with thyroid testing is that the normal range is set up to include 95% of the population but almost 10% of the population has thyroid problems... And half of them will fall in the normal range.

Good luck.

Ys255 Rookie
Ys255
Posted
  • Author

Oh right, I guess it can't hurt to get it checked out. Do you need to be on gluten or anything for testing?

1desperateladysaved Proficient
1desperateladysaved
Posted

I had troubles a few months after I went gluten free.  I got worse before I got better.  I believe I did experience withdrawal and or problems with cross contamination during that time.  I would recommend continuing the diet for at least 6 months while still considering other options.  Make sure to refine your gluten free diet, other gluten product use, and work on possible cross contamination issues to get a fair trial.  Keep on!

 

D

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tryme Rookie
tryme
Posted

Hi ys255,

I went through similar withdrawal. My GI symptoms disappeared in couple days but my energy and mood went really down and my anxiety up. It took about good 2 weeks for them to start stabilizing. I also started noticing my eczema on my hand return (I didn't have it for 3 years). All of that is setteling down now. I am roughly a month into my diet as well. Please hang in there . Starting is always the hardest part. The people here are very suportive and have wealth of knowledge. They can really empathise with you as they have been through similar struggles.

Also as everyone said, it will be a good idea to get your thyroid checked. I have hyperparathyroidism and it can cause similar GI symptoms and neurologic symptoms as celiac.

nvsmom Community Regular
nvsmom
Posted

Do you need to be on gluten or anything for testing?

 

No, just celiac tests require a gluten challeng of two months. Thyroid testing can be done at any time and is a separate issue.

 

Good luck!

Tbolt47 Newbie
Tbolt47
Posted

Ys,

 

For me 11 months gluten free the GI symptoms cleared up first, followed by the neurological, clumsiness, unsteady   like you were walking  on a boat etc. Lastly the Brain fog, depression and anxiety. I experienced the fatigue throughout the process.

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    • Mari
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      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
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