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Help! Still Not Feeling Better!

klahusen

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klahusen Newbie
klahusen
Posted

I was diagnosed with Celiac Disease in March of 2011 after loosing 25 pounds with all other symptoms, gas, bloating, chronic constipation. Since then I have followed a very strict gluten free diet. Over the past month I have been experiencing the same constipation and this past week has been followed by diarrhoea and constipation as well as more fatigue, weight loss and head aches. I have not been contaminated with gluten and am very frustrated as to what I must be eating that is causing this gluten reaction.

Any suggestions?! Any comments will help! I have been trying various elimination diets but so far feel helpless!

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GFreeMO Proficient
GFreeMO
Posted

I'm sorry that you are not feeling well. I think as time goes on, we become more and more sensitive to gluten. Are you eating a lot of gluten free processed foods? A lot of those products make many of us really sick. Also, what about another sensitivity such as dairy or soy. I've had to give up all of those things to feel better.

AVR1962 Collaborator
AVR1962
Posted

This is the tricky thing, without looking at everything you have been consuming it is hard to say. Assuming your gluten free diet is tight and you have read all your labels (only gluten-free chapstick, cooking spray, etc), your household is clean (meaning no crumbs), and you have been avoiding fast foods, canned, frozen and boxed foods then I would look at other options that could be causing you issues. I know soy gives some issues. I cannot eat high fructose as I have the same issues with it that I do with gluten.

Don't give up, I was in your shoes not long ago. I found I was making lots of mistakes. Once it really got into my head that anything I put in my mouth was potentially harming I took a very different view on what I was consuming.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I was diagnosed with Celiac Disease in March of 2011 after loosing 25 pounds with all other symptoms, gas, bloating, chronic constipation. Since then I have followed a very strict gluten free diet. Over the past month I have been experiencing the same constipation and this past week has been followed by diarrhoea and constipation as well as more fatigue, weight loss and head aches. I have not been contaminated with gluten and am very frustrated as to what I must be eating that is causing this gluten reaction.

Any suggestions?! Any comments will help! I have been trying various elimination diets but so far feel helpless!

So what are you eating? Did you make your house gluten-free or at least change out the things most likely to cause cross contamination? (toaster, collander, scracted non-stick cookware, etc) Do you have pets or kids or a significant other that still eats gluten?

Skylark Collaborator
Skylark
Posted

Have you tried eliminating dairy (casein in particular) as strictly as gluten?

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  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      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.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
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      By Colleen H · Posted

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    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
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