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Wait For Diagnosis Or Not?

crystal181

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crystal181 Newbie
crystal181
Posted

Hi all. I have been having problems for years that seem to be getting worse. I have been to so many different Drs that it's not even funny. Most recently I've been seeing Infectious Disease for my unexplained high WBC and host of other symptoms. Also I recently had a colonoscopy and Egd done. One sample was taken from my small intestine and was shown to have flattened villi. My Dr said this may be from wheat intolerance and to reduce my wheat intake for 4-6 weeks. Reduce not remove. Infectious disease thinks the probability of me having celiac disease is high. I had a tTG IgA but was neg. I have very low vitamin levels and tons of symptoms that point to celiac. They want me to see their GI dr to make the diagnosis. However he can't see me until January! My regular Dr is looking for someone to see me sooner but it still may be a month or more before I can get in. I really want to go gluten free now and not be miserable anymore. But I also know that my tests will show up negative if I go gluten-free. How important is it to have an official diagnosis?

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ravenwoodglass Mentor
ravenwoodglass
Posted

Any doctor can order a complete celiac panel for you. Make sure it includes the total IGA as if that is low it causes a false negative in the IGA celiac testing. You have already had the scope and were very lucky that it showed up positive as they only took one biopsy.

So ask your regular doctor to do the blood test for you. Do not go gluten free until the blood is drawn. 

momtoagfkid Newbie
momtoagfkid
Posted

I'm pretty new to dealing with Celiac, but I come down very strongly on the side of seeking a definitive diagnosis.

I believe it's in your best interest and the best interest of the wider celiac community.

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cyclinglady Grand Master
cyclinglady
Posted

While some people are never able to get a diagnosis (my hubby) and manage well on a gluten-free diet (14 years), a firm diganosis can mean more support from family, friends and medical. Celiac disease runs strongly in families. There is no resistance to testing when my kid needs it every few years even though she is symptom free (same for my siblings).

Keep eating gluten and ask your GP for the following complete panel:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

I also want to let you know that my ttg was NEGATIVE and I had only a positive on the DPG IGA and yet my biopsies revealed moderate to severe intestinal damage. I was fortunate that my doctor ordered the entire panel!

Welcome to the forum and let us know how it goes!

crystal181 Newbie
crystal181
Posted
  • Author

Thanks so much for the replies. I'm going to be patient and wait for the diagnosis but it's hard knowing that this might help solve all of my problems. I'm so miserable at this point and just want to feel better now. Tomorrow I'm going to see my regular Dr and have him order the blood tests.

crystal181 Newbie
crystal181
Posted
  • Author

I gave them the entire list and had the dr add HLA DQ2 DQ8 but they only took 6 vials of blood. They must have left something out. So now I wait....

kareng Grand Master
kareng
Posted

I gave them the entire list and had the dr add HLA DQ2 DQ8 but they only took 6 vials of blood. They must have left something out. So now I wait....

 

Often they do more than one test on a vial of blood.

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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
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    • cristiana
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      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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