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anewcreation

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anewcreation Newbie
anewcreation
Posted

So a week ago I went in for fasting blood work and asked to be tested for celiac as I have many symptoms. Results came back with iron deficiency, low vitamin D, inflammation, and weak positive for celiac. I am being referred to a gastroenterologist and rheumatologist but may take awhile before I get in and I'm tired if these symptoms..... but the real reason I'm here is to ask "WHERE DO I START!!!" I don't know where to start with how to eat!

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frieze Community Regular
frieze
Posted

don't change eating habits till testing is done.

squirmingitch Veteran
squirmingitch
Posted
49 minutes ago, frieze said:

don't change eating habits till testing is done.

I second this. You MUST be eating wheat for testing & that includes an endoscopy. Do not let up on the gluten eating, do not think you can stop now & then eat some a few days before the testing.

Also, do you have copies of your celiac blood panel? Can you post them here along with their reference ranges? You may not have had the full, current panel. AND a positive is a positive. Just because it's a weak positive does not negate the fact it is a positive.

bartfull Rising Star
bartfull
Posted

Yeah, it stinks that you have to stay on gluten until all testing is done, but remember, the end is in sight.

While you're waiting, go to the coping section here on the forums and pinned to the top you will see a thread called, "Newbie 101". Read that thread. Make sure you click on all of the links provided. Take notes. (Seriously, we remember things better if we write them down.)

You will also have time to clean your kitchen. If you live alone you can now get rid of all the gluten in your kitchen except for one small section where you will keep the poison, I mean gluten foods, that you have to keep eating for a while. If you have a shared household, you can set up a section for your own foods, find a way to mark your own foods and condiments, and purchase the new things you'll need, such as a toaster, new pots and pans, etc.

And remember, the light at the end of your tunnel is NOT a train, it is clear blue sky. Soon you will be basking in it. And in the meantime, you can come here for answers and support. (((((HUGS)))))

squirmingitch Veteran
squirmingitch
Posted

Well said Barty!

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    • 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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